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.

Google Plus & Why Pseudonymity Really Really Matters

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

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.