Friday, August 26, 2011

The Disability Hierarchy 3: Only Yourself To Blame

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, August 22, 2011

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.

Monday, August 08, 2011

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.

Monday, August 01, 2011

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.