Thursday, 13 January 2011

Blaming the Vulnerable

Last week I was heavily criticised by someone online for leaving in the middle of a conversation. My willingness to stay and talk to this person were, in their view, proof of my integrity and goodwill. When I explained that I actually did have to leave, because I had to give someone with sight problems a lift, the response was to the effect that I must be trying to use guilt as a weapon, to sidestep the issue under discussion: "Oh, playing the emotional card now are we?"

My last few posts have focussed on science, a discipline in which a mature person accepts that human opinions have no bearing whatever on the truth. This post, I should warn you, while it contains a lot of information and stories, will be opinionated, subjective, and including some doubtless imperfect memories. So please take it with a pinch of salt if such is your desire. (It's sad that I have to include a warning like this, but it is amazing how many grown-up people cannot or do not choose to distinguish what type of argument is being put forward.)

The person on the Internet could not have known the problems the person I was driving had had. They did not know that they were left untreated for months between cataract operations, giving their eyes a sightedness difference of 20. Yes, I do mean the same measurement used for short versus long sight; most people's errors, as I understand it, are under one; my eyes are -7 and -8 which means I basically can't see a thing without my specs. Do try them on if you meet me. People find it quite an experience! How could this person behind a screen possibly know what life was like with such different eyes - the dizziness, the accidents, the frustration, the loss of self-esteem, indeed the loss of one's own identity? Well, they couldn't. I didn't expect them to. But what bothered me was the assumption that disability must be to do with attention-seeking rather than reality. Because I have seen so very much of that when it comes to dealing with vulnerable people.

I was, like so many, bullied at school. When I was 13, a classmate who was a friend - not a very reliable friend, but someone who I could have a conversation with occasionally, so a rarity - told me earnestly: "Alice, I'm sorry, but some people -" nervous laugh "really -" nervous, breath-catching, you-know-what-I-mean sort of laugh - "don't like you." In other words, I simply must be doing something to provoke their behaviour. It just must be my fault.

During university I suffered from a long-term illness. This meant that a couple of times I had to hand in my work a few days late. (It also meant that pretty much all my energy was expended just dragging myself to lectures, but that's another story.) My first set of housemates knew about my illness; sadly, they all graduated before I did, and my second set leapt to the conclusion that I was "taking the piss out of our degree". They were not the kind of people I could even tell that I was ill (or were observant enough to notice for themselves - though I made every effort to hide my symptoms as it was my greatest terror that people would find them, and therefore my company, distasteful). The idea that I might have a genuine reason for working slowly never even occurred to them. As far as they were concerned, it was simply obvious that I was a liar.

Jody McIntyre experienced precisely the same thing when he was dragged out of his wheelchair on the student protests. Despite the fact that he was in a wheelchair, according to many viewers, he simply must have been doing something to provoke this action. Maybe, for example, his wheelchair could be an offensive weapon. Now, I actually work in a charity that hires out wheelchairs and I knew no more about these contraptions than the next person until I started having to handle them. Have you ever tried to lift one of the wretched things up? There is a technique to it - pull up its seat to make it narrow, and get it at either end . . . oh, there's a catch. The person must be out of the wheelchair. They could hardly do such a thing themselves. OK, so his brother could have pushed him into a policeman, which would have been a lot more dangerous for Jody than the policeman and a highly unlikely scenario. OK, so it's pretty painful if someone in a wheelchair runs into your foot on the bus. I'm not sure this was any justification for manhandling someone far less able to fight back than your average protestor, however. Perhaps they thought, as so many do, that he was asking for it, and faking?

Laurie Penny addresses this. "The press has been trying to imply that, because Jody is a revolutionary activist and ideologue who has travelled to Palestine and South America, he cannot be a 'real' disabled person." She goes on to explain, "The attitude is that there are two types of disabled person: there are real disabled people, who are quiet and grateful and utterly incapable of any sort of personal agency whatsoever, and fake disabled people – people like Jody McIntyre, who are disqualified from being truly disabled by virtue of having personality, ambition, outside interests and, in this case, the cojones to stand up to a corrupt and duplicitous government."

Sadly, someone in a wheelchair who I know subscribes to exactly the same line of thought: she knows of people who fake a disability and therefore, she feels, the police were right to assume that Jody McIntyre was one of these and therefore somehow had the right to attack him. I suppose this is the same sort of thing as women who discourage other women from, say, going into science or a high-flying career; I've met or read of many women who say the most sexism they encountered was not from men, but from fellow women.

Or even of a boss I had when I was 18, who had wanted, when young, to be an idealist; but after encountering a great deal of dishonesty on the part of others had given up and decided to conduct himself and his company in line with the assumption that dishonesty is the only useful and even respectable way to do business. He loathed that about himself. And he hated my youthful idealism and was determined that I should become embittered and self-loathing, like him. Just like the prefects at school who bullied younger pupils on the grounds that "they did it to us, so why shouldn't we do it to them?" Perhaps I'm taking the comparison a little too far. To clarify, I'm talking about a tendency to focus on one's own experience and the perceived justice around that, rather than aiming at a higher justice for other people.

I'm not saying people never lie, or that nobody's on benefits for treatable conditions. But that is actually a tiny minority. People like Wagner from X-factor do the genuinely disabled a great disservice, and the consequences of being tarred with the same brush as "fakes" - in other words, to be a needless consumer, whose support can be done away with - can be terrible. Disability Living Allowance is being slashed; the Independent Living Fund which allows disabled people to get out of the house and not rely on full-time care is being slashed - a measure which may be unlawful by preventing a decent quality of life. In some cases, benefits can be a vital breathing space in order for a sick or otherwise troubled individual to recover and thereafter stop needing state help. To be on benefits also does not mean the state is necessarily supporting a person who could and would otherwise work; the money might be vital to get equipment and transport to get to work. By assuming mass fraud, and taking away a little (presumably in order to award further largesse to those who really don't need it, like bankers), you end up making a lot of people not only desperate, with their lives in inhumane crisis, but also wholly dependent on the state and ending up costing a lot more - when this simply need not be so.

But there's another issue here, too. Although that "emotional card" comment was basically any old throwaway insult, I think it reveals another fundamental misconception: that disability is an emotional rather than a practical issue.

Although of course many unpleasant emotions were felt and expressed - understandably! - by the person with sight problems, the very last thing someone with a disability needs is emotion. To be practical is what they need (in this case, to be given a lift - not a very emotional thing to do). The character Midori Kobayashi in Murakami's unforgettable novel Norwegian Wood has to deal with this misconception from relatives while caring for her sick father. Only 19 or 20 years old, her mother already dead and her father dying of a brain tumour, she eats like a horse in the hospital canteen, while the friend she brought to the hospital is unable to eat:
"Not hungry?" she asked, sipping her tea.
"Not really," I said.
"It's the hospital," she said, scanning the cafeteria. "This always happens when people aren't used to the place. The smells, the sounds, the stale air, patients' faces, stress, irritation, disappointment, fatigue - that's what does it. It grabs you in the stomach and kills your appetite. Once you're used to it, though, it's no problem at all. Plus, you can't really take care of a sick person unless you eat properly. It's true. I know what I'm talking about because I've done it with my grandfather, my grandmother, my mother, and now my father. You never know when you're going to have to miss your next meal, so it's important to eat while you can."
"I see what you mean," I said.
"Relatives come to visit and they eat with me here, and they always leave half their food, like you. And they always say, 'Oh, Midori, it's wonderful you've got such a healthy appetite. I'm too upset to eat.' But get serious, I'm the one who's actually here taking care of the patient! They just have to drop by and show a little sympathy. I'm the one who wipes the up the shit and collects the phlegm and mops the brows. If sympathy was all it took to clean up shit, I'd have 50 times as much sympathy as anybody else! Instead, they see me eating all my food and they give me this look and say, 'Oh, Midori, you've got such a healthy appetite.' What do they think I am, a donkey pulling a cart? They're old enough to know how the world really works, so why are they so stupid? It's easy to talk big, but the important thing is whether or not you clean up the shit. I can be hurt, you know. I can get as exhausted as anyone else. I can feel so bad I want to cry, too. I mean, you try watching a gang of doctors get together and cut open somebody's head when there's no hope of saving them, and stirring things up in there, and doing it again and again, and every time they do it it makes the person worse and a little bit crazier, and see how you like it! And on top of it, you see your savings disappear. I don't know if I can keep going to university for another three-and-a-half years, and there's no way my sister can afford a wedding ceremony at this rate."
Midori was dealing with impending tragedy. Disability, though, should not be tragic. It's only tragic when people make it so: by removing a small amount of support, or by regarding a disabled person as someone necessarily pathetic and helpless.

The Social Model of Disability urges a different way of looking at things. Some of it is a little annoying - asking us to change our language (page 5), which to me seems in some cases right and in others roughly as useful as painting all houses white because you happen to have heard that some pink houses are falling to bits. However, it does include something very important: that society and its systems and technology are adapted to make life easier for all of us, and we'd all be stunned and less able if certain things were lost. Take electricity, clean water, or clothing. Manufacturing and providing those is a business lots of us are in. It's only right for everybody to have them. They're nothing to do with emotion, but rather rights, comfort, efficiency, and basic dignity among others.

I wonder if all this sounds very demanding? Even for the most able-bodied, life and other people can be exceptionally stressful and seems to ask, every day, for more than you've got to give. I've worked with learning disabled people, I've cared about them and we've got to know each other. It's only fair; it can be a joy - and it can also be so draining that providing what they need comes at the expense of being myself and all the energy I've got. And believe me, nobody says thank you for that. To someone who works incredibly hard all day, satisfying the demands of people around them, who is desperately worried about their mortgage and is under the impression for whatever reason that disabled people are largely scroungers who are screaming for more money and for sympathy, it must engender real resentment. Even to someone who believes that most disabled people on benefits are genuine, it might be easy to feel defensive. Why are they constantly being told to change their language, when they've never said anything to offend? Why are they always being accused of things like "I take medicine because people like you won't accept me" (a signature on a web forum) and "disabilities are what other people turn your problems into" (a notice in an office) - when they are actually all for equality, often kind to others even while on the receiving end of selfish behaviour themselves? This is a slap in the face; it's hurtful; it makes them out to be hateful and that simply isn't true.

During the worst period of my illness I vaguely knew a girl in a wheelchair. She had a hoist over her bed and a carer who came to her room every day, of whom she spoke very offhandedly, as though the carer was a robot owed to her. All right, I'll be honest, I didn't like her. I thought she treated other people with contempt. Even had she not, it might well still have grated on me that her problems were visible and garnered support and sympathy from every corner, while my own were shameful, invisible, impossible to discuss, and that a couple of late essays made me get seen as a liar.

I grew out of this sort of resentment once I was healthier and had more resources to expend on other people. A few years later I met another girl who couldn't walk and was having trouble clearing out her room on her last day in halls. The university had promised to send someone to help her, but the said someone never arrived. I took it upon myself to help instead and was confused at the intensity of her gratitude; it was only what I would hope someone else would do for me in a similar situation, and it was my pleasure to help out a nice person.

So perhaps one's attitude to disability depends on familiarity, knowledge, and also what emotional resources they have of their own. One can't assume that someone without these is a bad person or an idiot. As I wrote about racism, when you do not meet such people, such a thing is theoretical and seems like an accusation, an imposition - which in turn gives one a very uncomfortable mixture of guilt and defensiveness, all too easy to turn into outright anger.

Last September, SCOPE claimed that disabled people were "invisible". My friend Joely wrote a terrific blog post about this. Was it true? Do people simply not think of those they know as "disabled", because it's a label that doesn't seem to apply to reality? Do they simply not think of problems that don't put you in a wheelchair as disabilities? When my charity had new banners made, the printers did a terrific job - but every single picture showed someone in a wheelchair. We explained to them that disability includes a far wider-ranging set of symptoms and people than this; and they went and re-did it to include people using various types of equipment, including a white stick. That, of course, doesn't include mental disabilities, but that wasn't the printers' fault obviously!

SCOPE wrote of their shock at people being "pushed to the fringes of society" - another accusation - but at least conceded to the BBC that "It's not that people are nasty, but they might not know what to say. The less familiar they are with disabled people, the more the embarrassment. The unwillingness to offend can cause the exclusion," and of course, not all houses have appropriate physical access.

This, again, is the "emotional" problem. OK, I can't speak for anyone but me, I know. But can I just tell you something? Picture me as ill again, unable to do some things, and in constant pain, and therefore by some definitions "disabled". Perhaps, because I've acquired this label, you'll suddenly be more worried about offending me. Let me assure you that such is very unlikely. I will not be offended if you ask me questions about my sickness, or if you bring it up in conversation. When I was too weak to go on particularly difficult walks, I was not offended that others did so without me. When someone cooked curry that was just the kind of fieriness to set my stomach off again, it meant I went hungry, but I was not offended because he had not known and I had not thought to tell him. If someone says "Alice, this food might be too hot for you," I will be grateful that you cared.

All this is easy to write; but in practice? I still worry about offending people by mentioning whatever disability or difficulty they have, unless they mention it themselves or there's a reason it needs to be brought up. If I see someone with a massive injury or physical difference from the rest of us, it's very hard not to look in curiosity and then I'm torn in half - is it ruder to stare or to pretend (probably badly) that you haven't even noticed them, and make them thus invisible and perhaps more alone? I don't know; I haven't actually been in that situation and would love to know the answer.

No, there's a few things that annoy me, but only a few. One is people assuming that I only wear glasses to be annoying, which is rare, but has happened. Women tell me scornfully that I ought to switch to contacts (which I really don't like, and that's my business); men tell me to remove them so they can look at my eyes, and then complain when I put them back on again. I've even been told "I prefer you without your glasses" which one does not realise is just the same as being told "I prefer you without your wheelchair". My landlord in Spain once had to go to do jury service. He had polio when he was young and one of his legs was barely more substantial than a piece of cooked spaghetti - he could pick it up, twist it round and put it next to his head as a pantomime telephone! Hilarious but not much good to walk on. He used crutches. He could prop himself up against a counter but that was it really. Unfortunately, to enter the courtrooms for jury service, he had to go through a metal detector. They told him to just pop his crutches on the conveyor belt and hop through on his own. He told them that was impossible. They affected not to understand. So he left the court and refused to do the jury service. That kind of thing is offensive. Innocent mistakes and curiosity aren't. The only other kind of thing I can think of is being accused of faking or exaggerating, or told that it was somehow my own fault.

That's the most sinister thing of all that can happen: to claim that, if someone has a problem, it's their fault. It can happen to bully victims. It happened to Jody McIntyre. It happens to the unemployed. It happened to the poor the Victorians called "undeserving". It happened to the countries Bismarck took Prussia to war with. It happens to rape victims. It happened - and this is where my imperfect memory comes in - to a woman I think with lupus, or some very unpleasant illness, whose extended family believed in reincarnation and previous lives. They said she must have been evil in one of hers, and this affliction was her reward.

And the reason for such a thing to happen, it seems to me, actually shows the most vulnerable side of the accusers: that they are afraid of having it happen to them. But if it's the victim's fault, then gives you the comforting illusion of control. If you don't do whatever provocative thing the victim did, and especially if you're careful to join the voices condemning whatever it was, the punishment won't happen to you.

That is a fallacy. It's superstition. Disability and sickness are entirely democratic and can and do happen to anybody. They're not for some inferior class of people; here's an article about disabled scientists, a profession that I personally regard especially highly.

But such a fallacy has particularly nasty consequences, which can include not only abandoning the vulnerable, but using them as targets for attacks. Fiona Pilkington and her daughter Francecca Hardwick are an all-too-obvious example. This week, debate abounds about Kenneth Tong's tweets targeted at anorexics. To me, the significant issue is not whether it's free speech or not, but that some of the most vulnerable people you can imagine, those least in control of what goes on around them, were made the subjects of this sustained campaign of aggression. (One could argue, having read the redoubtable Johann Hari's interview with him, that Tong himself is desperately vulnerable, and one less so would not have done this.) I can't help but feel that Jody McIntyre was attacked because he was the weakest person available. As Mark Thomas remarks in his recording "The Night that War Broke Out": "They didn't attack Iraq because they were strong. It was because they were weak."

So many problems, so many questions. You may feel it's all rather amorphous, and that many of the topics I've covered actually have nothing to do with each other. I think they do; but your guess is as good as mine. I may be wrong about a great many things. But at least I have now met dozens through my job at a charity, and for the vast majority greatly enjoyed their company. So I have one or two suggestions, none of which are very earth-shattering, but here goes.

Firstly, both sides need to drop the accusatory and defensive behaviour. The magazine Disability Now for instance is full of furious ranting which - while I can understand the need to let off steam - is often very shocking to read, and immediately makes me feel defensive simply for having a pair of working legs. Similarly, the media and government need to stop all this nonsense about fraud and scrounging. Not only is this behaviour counter-productive but it gives the impression of two opposing sides, "us" and "them", when in reality there is probably no such thing. The "other people" who won't provide this and that, or whose attitudes are wrong - who are they? Don't blame one individual or organisation for all the problems you've ever had. Many's the time when I was teacher training that I was on the receiving end of a flood of grievances about "you teachers"; apparently being a member of that group made me personally accountable for the failings of every single one. If that's not "dehumanising", I don't know what is.

Secondly, I am certain that there is a very real problem of disabled people "not having a voice". This is only too true for many vulnerable groups - take carers, for whom the statistics are horrifying. There are so many questions I have, some of which I mention earlier, which are probably silly - yet even silly questions need an answer. But is "having a voice" - say - more media attention, or is it simply more mingling with others who don't meet you? Familiarity can work wonders.

I have only one further suggestion, vaguer than everything else: don't be afraid. Don't be afraid of disabled people. They won't infect you with their problem, bite your head off or (usually) take you to court if you say "blind" rather than "visually impaired". Don't be quite so afraid of disability itself: if it happens to you, it doesn't mean you're helpless, unable to do anything, or any less of a person - your other abilities may in time grow stronger, to compensate, or as a challenge. Don't be afraid of what society needs to do to support disabled people: it can be done, and with a little goodwill between people it's usually not difficult, expensive or burdensome.

And if I have to leave you because I need to give someone a lift, then I'm not abandoning you, lying, manipulating your feelings or trying to accuse you of anything. I'm just giving someone a lift.


Ash Pryce said...

What an amazing article. So many things I can understand and relate to. I don't consider myself disabled, however a couple of things do count as "disabilities" to some degree and I've jsut been placed on Employment Support Allowance which is similar to Disability Allowance.

I am always surprised at how many things count as a "disability" until I tink about it and realise that yes, certain illnesses and conditions do mean you are unable to do certain things. For example I could never work in construction or anything too manually themed because of physical problems which rarly manifest but can mean I am unable to do certain tasks when they do crop up.

There is also the issue of mental health and the fact that soemone suffering even from "mild" depression can be debilitated in a way that many can't understand and some even scoff at accusing the person of just being lazy, or that they need to cheer up (Word to the wise- never tell someone with depression to cheer up!).

An interesting line that caught my eye (no pun) was "people assuming that I only wear glasses to be annoying". As a glasses wearer (and one who actually quite likes my glasses as they look pretty cool) I have never come across this! People accused you of tryign to be annoying! ha!

This was a great post I will certainly be spreading around- even without the wonderful commentary, it needs mentioning just for getting in a Murakami quote! (Though I must confess that Norwegian Wood is my second least favourite Murakami novel, I prefer his far out there surrealism)

Ash Pryce

ians12 said...

Wow that's interesting, someone actually wrote a book with a realistic character who is a Carer! I must confess my ignorance at never having heard of Murakami though.
Excellent post and a good read, lets hope some who need a good prod sometimes to help them understand disabled issues will read it and inwardly digest...

Alice said...

Slight change of subject . . . it's at this point that we get a heartrending story, again from Johann Hari:

Several people in the comments seem to think that it's hypocritical to object because he should have cared for her himself. But then the world would have lost a valuable journalist. I bet these people wouldn't be willing to provide similar care - they are, again, leaping to blame and ridicule because they don't think it's going to happen to them. Care should be easy and natural for everybody to do. Why is selfishness and 100% dedication to inhuman jobs regarded as so essential?

As an aside, I'm getting a huge amount of interest in this post from people who've experienced illnesses or disabilities, but none at all from those who haven't. Which is worrying, because it is actually something that involves us all. That is, if our society is a humane one. Surely?

Thanks lots for comments, linking, retweets, etc!

Belinda said...

Sometimes it actually is your fault.

Alice said...

Hi Belinda, can you give us some examples? :-)