Wednesday, August 22, 2012

On Weddings #1 : The Heeby-Jeebies

A wooden bench against a white wall with
a shadow of a two people embracing across
both wall and bench.
Having complained at some length about the bombardment of wedding-related advice, suggestions and miscellaneous pressure Stephen and I received within the first seventy-two hours of becoming engaged, I asked my friend Vic, "What is a dragee anyway?"

She answered, "Somebody who doesn't want to be at the wedding?"

(Apparently, dragee is a bit of confectionery, like a sugared almond but not.  I was later reminded that at my sister's wedding, they had some chocolate ones covered in gold plate.  Or possibly gold-leaf.  Either way, they tasted kind of metallic.)

For many years, I had recurring nightmares about being the bride in a traditional straight wedding, which are only partly explained by my subconscious imploring me to leave that relationship. Whilst I deeply regret getting married the first time, I don't regret the way the marriage bit was administered; in secret without romance or ceremony (except as much as is legally necessary). Weddings frightened me.

Five years ago, I wrote:
The traditional wedding is a fantastic manifestation of the traditional inequalities in marriage. Women do all the work; the bride must organise everything, the venue, the decoration, the itinerary, she must appease family members when the political conflicts arise over the seating plan. In many cases, the bride even chooses what the groom is going to wear. And all this for her big day, the happiest day of her life etc., etc.. Meanwhile, the groom is obliged to make a big show of reluctance, stag parties and so on, and turn up to perform his brief role in proceedings somewhat hungover. He gets to speak, of course; whilst the women did all the work, it is the men who get to make the speeches.  
It's a horrible caricature, but you have attended this wedding, haven't you? You bought them the hideous vase with the turquoise flowers on, remember?
It is a horrible caricature and now I don't think it's fair.  I have been to straight weddings a lot like that which nevertheless celebrated basically egalitarian relationships. These events are all about symbol and ceremony, and it is fairly common for people to play a symbolic role that may be a world away from their usual role, just as it is common to dress up in clothes than you'd never normally wear. I have known some formidable matriarchs who originally vowed, "to honour and obey."

Stephen's engagement ring: a silver ring with the
texture of a leaf skeleton.
There was never any danger of anything like that when Stephen and I got engaged, but as we began to talk about things - especially when we began talking to other people - I became subject to a touch of the heeby-jeebies. This wasn't exactly helped by a particularly lengthy conversation with my parents which began
"It's your wedding and you can do exactly what you like - we'll support you and help in any way, whatever you decide to do.  But..."
Among their many suggestions and concerns was the worry that Stephen's parents might be heartbroken if we didn't get married in a Church.  There are lots of personal and practical reasons for not doing so, even though Stephen and his family are Christian.  We'd talked this through and were sure Stephen's parents would be happy with our plans. My entirely non-religious parents weren't. We listened to and humoured them up to the point where my Dad stated that he knew a Canon who owed him a favour. Seriously. And no, I didn't dare ask.

Then there's noticing things written about weddings and the process of getting married. My rage against groups who think marriage belongs to them has only increased.  I notice articles or blog posts extolling the virtues of keeping names or taking someone else's name or combining the two surnames into a new one (our options there would be Welly or Kitehead - we should run an internet poll), all of which strongly imply that there's only one right way. At the time of writing, I think I know what I'll do, but I'm not completely sure.  I know, from experience, that whatever I do I will be judged for it.

I also notice products aimed at me, a woman about to get married.  Most of these are just excessive and silly, but some, such as Bridal Betty (via Vagenda), are utterly baffling; blue dye for your pubic hair (or down there as the website puts it - it's one thing to sell pubic hair dye, it's quite another to use the word pubic) raises many pressing questions, such as
  • Attempts to dye my walnut-coloured (head) hair purple have always failed because I couldn't bring myself to bleach it beforehand. Wouldn't this be an issue given that most of the world's short and curlies are nearly black? 
  • I understand Bridal Underwear is also a thing. It's very expensive and almost always white. Are these products compatible?  Even on a warm day?
  • Does it include a warning for couples who have never seen one another naked before their wedding night? 
  • Surely, celebrity influence on what women do with our pubic hair has gone far enough without Marge Simpson muscling in on the action?
  • Why?  As in, why oh why oh why?
You get the picture.  About weddings, I mean.  I got a little distracted by the thought of blue pubes... 

Thing is, I think weddings are a fundamentally great thing.  It is a public ritual - something we rarely do in this culture - which celebrates love.  Not only romantic love, but familial love, friendship, love among a community and sometimes spiritual love (whether expressed in a religious building or not). All these people come together.  Families are joined together.  There's music, special food, poetry and speeches.  Two people declare their love and commitment to each other in front of the other people they love and who love them.

My engagement ring: a silver swirly sea-inspired
ring with a round sapphire in it.
(Getting it reduced to fit my finger.)
It's a wonderful thing.  It isn't necessary for lasting love and it isn't sufficient for lasting love - some people marry who are not in love at all, while many others live happily together for a lifetime without marriage. But in general, I'm all for weddings.

Stephen and I want to celebrate our love in a public way. We have become part of one another's families and have befriended one another's friends. We want to bring the principle players together and celebrate that. We also want the legal and social advantages of being married.  Stephen looks really hot in a suit. So we both want a wedding.

But I need to do some working out.  And this is where blogging comes in handy!

Tuesday, August 14, 2012

Some Things We Could Actually Do To Prevent Rape

This post discusses rape as well as what we can do about it. Be warned.

There are only two prominent messages we hear about how to prevent rape; don't get raped and don't commit rape. Police campaigns as well as horrendously clumsy statements by police and politions regularly attract controversy for their implicit and occasionally explict victim-blaming; the suggestion that if women took steps to avoid rape, it wouldn't happen. This is a problem. I don't need to explain why.

But telling men "Don't rape!" is also fairly futile, for three very siginificant reasons.
  1. The vast majority of men are neither rapists nor potential rapists. As someone who has never downloaded an illegal film, bought or borrowed a pirate, I feel mildly insulted having to sit through the rowdy anti-piracy warnings at the beginning of rented DVDs. I imagine being told not to rape is a bit like that, only you know, about rape.
  2. Men who commit rape are extremely unlikely to call it rape. If you want to identify rapists among survey respondents, you phrase it differently. Rapists generally regard real rape as something a notch or two worse than the rapes they have committed.
  3. Some men are the victims of rape and not all rapists are men. This isn't merely important in terms of But what about men?! but (a) these victims matter (b) the model of rape as an inevitable consequence of straight men's sexuality and something women have to protect themselves against is at the heart of our problem with rape. 
So, what can we do to actually tackle rape as ordinary folk?  My attempt to answer this question is edging toward epic, but only because I feel very strongly about this.  It would make me very very happy if others came up with better ideas.


1. Look after your friends and don't mind your own business. 

While women are in much more danger of sexual violence, men are more likely to be injured or killed in other forms of street violence. So where late nights and drink is involved, everyone needs taking care of. When out at night, pay attention to where your friends are, who they are with and how they are doing. If any friend is
  • extremely drunk, unwell or otherwise vulnerable 
  • receiving unwelcome sexual attention 
  • receiving sexual attention from someone with an evil moustache or something else that gives you the willies 
  • paying sexual attention to someone who seems uncomfortable, or is themselves very drunk, very young etc. 
then simply stay with them or make sure another trusted and vaguely sober person stays with them. 

There is a limit to that, of course; if your friend actually tells you to go away, then you need to do so, but by that stage you'll have at least dropped the hint that you feel something is not right. There's no need to get all white-knighty and tell your friends how to behave, but exchanging our instincts about new people and situations, “I just don't like what's happening here.” is perfectly reasonable and one of the main advantages of being social animals.

 If you're wrong, the very worst that can happen is someone tells you to bugger off.  If you're right, you could save your friends an awful lot of trouble.


2. Encourage others to trust their instincts when it comes to creepy and inappropriate behaviour.

To the greatest extent, our culture teaches us not to trust ourselves when it comes to unwanted sexual attention. Then, having convinced ourselves we have a legitimate concern, we talk to other people about our feelings and are often told to question them further; Are you sure it was meant that way? Are you sure they weren't just being friendly? Are you quite sure they meant to touch you? You should take it as a compliment. You shouldn't read too much into it. And so on.

This is a disaster.

Nobody is entitled to anybody else's time, energy, attention, company, friendship or anything else. No matter how drunk, lonely or socially inept a person may be - no matter how funny, popular or decent they may be regarded by others - it is perfectly okay to say, "This thing you're doing makes me uncomfortable. Please stop it." and "You're making me uncomfortable. Please leave." and it's okay to respectfully remove yourself from their presence and have nothing more to do with them, with or without explanation.

Encourage your friends. Support their decisions to avoid people who make them feel uncomfortable. When they question themselves (and they often do - my mother thought she was being unkind to change the time she went swimming to avoid a regular at the pool who made sexually explicit remarks about her*), reassure them that it is more important that they feel comfortable than anyone else - even another trusted person - has access to them. Even if they are completely over-reacting to some poor hapless person's clumsy advances, acting on their intuition this time is excellent practice for the time when it's not an over-reaction.

I had written this bit when the wonderful Captain Awkward and the Awkward Community covered this issue better and more thoroughly than I ever could. Part of this obviously has to be


3. Exercise zero tolerance towards sexually aggressive people.  

Sometimes, people make genuine mistakes with flirtation and other times, innocent behaviour happens to press someone's buttons.  But there are limitations to this, which really ought to be obvious to everyone. Obvious examples include unwanted touching, spiking a drink, making sexually explicit remarks out of context, joking about sexual coercion (see below) and anything if it is repeated after someone made it clear they felt uncomfortable.

When a man oversteps this mark with a woman, other women are often nervous of cutting him off because they don't want to seem over-sensitive, uptight or hostile to male attention**.  Other men are nervous of going against the brotherhood, of failing to laugh off or empathise with their comrade's actions. When a woman is creeping out a man, both victim and perpetrator become a joke; my family laughed about the drunk woman who'd repeatedly tried to kiss my reluctant cousin because women aren't supposed to be sexually assertive and men are supposed to be up for whatever comes their way.  In my limited experience, gay and lesbian creeps are treated with less tolerance, except within scenes where - like the kink community - the defensiveness of the community as a safe, tolerant and funky place can silence members who have a problem.

Not only are people who violate other's boundaries in small ways very likely to violate them in much bigger ways, but people who cross these moral lines are unlikely to restrict themselves to this particular kind of bad. Often people tolerate creeps in their social circle because they themselves are immune to their attentions. But someone who doesn't care about not intimidating someone they find sexually attractive is unlikely to care all that much about not being an arsehole, in myriad other ways, to someone who considers them a friend.


4. Give all young people the same information about personal safety.  Don't tell boys or girls that their sexuality makes them dangerous.

As a girl, I learnt that I needed to be afraid of rape. Girls start receiving sexual harassment on the street very early on, and by the time a few of us had been shouted at, groped, followed home etc., we began to exchange ideas about how to defend ourselves if we were actually attacked. This now amuses me really; a can of hairspray and a lighter will make a rudimentary flamethrower but you need both hands and about thirty seconds longer than you probably have to fend off an attack. But we understood that we faced this threat. Anyone who thinks that women don't know the danger they are in is quite wrong.

At the same time, entering into adolescence, we understood that there was a demand on us to be sexy which we had to balance up with this risk of rape – dress too modestly and you're not sexy, dress too sexily and you might be raped. Even in the twenty-first century, a lot of the discussions around the sexualisation of young girls hinges on the idea of children being in danger of giving off sexual messages to men, as opposed to kids adopting a value system which is going to make them unhappy. When I was a teenager, bridging tomboy to hippy, I thought I received a lot of sexual harassment because I was tall and I had big breasts. In fact, I was told that men must think I was older than I really was. So it was all about me, and things I couldn't help about myself.

Nonsense. I was in my primary school uniform when I received my first sexual harassment from adult men. Mature looking or sexily-dressed children don't confuse men. Sexual harassment is an abnormal behaviour, and the people who do it operate abnormally; children are vulnerable and the kind of men who shout lewd remarks or molest women in the street and on public transport look for vulnerable-looking women, including children, whether they are wearing high-heels or trainers.

So girls should not receive dynamically different messages from boys about safety on the streets.
All young people need to be taught basic self-defence and to be given basic advice about travelling in groups, not drinking to a point of incapacity, avoiding certain places late at night, trusting and sharing their instincts about people and situations, only using registered cabs and so on. There is no evidence that anyone's clothing effects their likelihood of being sexually assaulted, so nobody should receive any advice about that.

Girls are much more likely to be subject to sexual harassment, but as it can happen to boys too (as well as other forms of harassment, e.g. racist, homophobic and disablist abuse) and strategies for dealing with this are much the same whoever you are. A culture which endlessly lectures girls on how dangerous there lives and bodies are but implicitly assures boys that no harm can come to them and there's never any need for them to run away, fails everybody.



5. Encourage a culture where everyone gets to say "No" without negative social consequences and respect a "No" whenever you hear one. 

At primary school, a teacher I didn't know accosted me in the corridor and asked me to run an errand. I didn't fully understand what was being asked of me – it was something to do with putting a dinner tray somewhere where it would be washed up, but I didn't know where she meant and I was anxious about getting in trouble with my own teacher for being late. So I said that I didn't want to. I had no idea how rude that was; apparently, it was the most shocking insubordination this teacher had ever encountered and what followed was the single worst telling-off I received in my entire school career.

During an early experience of sexual abuse, I actually said, with a forced laugh, “What about consent?”. This says a lot about my socialisation. I was desperately trying to work out the code that would make it stop. I had tried, “I don't think I want this.” and “I really don't think I want this.” Even when I was in great pain and crying, I still reached for, “Please can we stop this now?”

I don't believe that this happened because I didn't know how to say “No!” in a firm and forceful manner - I've never met anyone who had such problems with nuance that they confuse, “I don't think I want this.” with “Yes!” or even “I'm not bothered either way so do as you feel.”  But “No!” may well have been useful and I simply didn't have it. I don't even have it now. I probably have it for a stranger jumping out of the bushes, but for anyone I know well, like or respect on any level? Probably not.

This is partly about gender, although I know men who don't have “No!” and women who do. Rebelling against authority, to some extent, is part of our cultural narratives about how boys become men. They get to say “No!” to parents, teachers, maybe even the law, at least for a short time, in order to assert their masculine individuality. Culturally, teenager girl's rebellion is almost always framed as defying one's parents by accommodating the needs of one's male peers, putting out, rather than asserting one's own sexuality or non-sexual aspects of identity. The adult version of that telling-off I received as a child is being called a selfish bitch, a cock tease, a frigid dyke and so on.

However, it's worth saying how tricky it can be for boys and men to say “No!” in a sexual context, because of the idea that a real man, whether straight or queer, is preoccupied with and available for sex with any marginally attractive person. This idea feeds into the idea both that all men are potential rapists struggling to control themselves, as well as the idea that, immune from the possibility of unwanted sexual attention, men cannot be raped. One of the disturbing aspects of the otherwise hilarious Cosmo's 44 Most Ridiculous Sex Tips (this remains one of the funniest things I have read this year) and other “sex tips” from women's magazines is the number which don't involve even looking for basic clues as to whether a male partner might, at that moment, enjoy being groped, ravished or even physically assaulted as part of an experiment.

Which brings me onto


6. Practice, Discuss and Teach Your Kids About Enthusiastic Consent

Enthusiastic consent is the principle that great sex means ongoing positive communication between parties; you check with your partner and express your own enthusiasm (with words, noises, touch, gestures, eyebrow code etc.) at every stage. You don't have sex with someone just because they want to, you feel obliged to, because they've nagged you or sulked about it or because it gives you something to do with your hands while you work on that difficult formula. You don't have sex with someone who you suspect doesn't feel like it or seems uncertain about how they feel, or is very tired or drunk or otherwise vulnerable. You don't assume that the other person's willingness to be with you in one context (e.g their presence in your bed, their kissing you, their performing certain sexual acts on you) means that the other party is up for anything else that crosses your mind. You ask. You respect their answer. You expect the same from them.

Practicing enthusiastic consent isn't merely about being a considerate lover or avoiding doing something sexual that wasn't entirely welcome. You're likely to be in a much better position for managing your reproductive choices and, outside a lifelong monogamous relationship, it also helps protect your partners and their future partners by setting a precedent.

This does warrant discussion because (a) this isn't yet a dominant model of how sex should be in our culture – it certainly isn't what we see in the films, in Men's or Women's Magazines, let alone porn - and (b) some of us struggle with how to practice this, because of programming and personal issues around sex. What if talking out loud is a turn-off for a partner? What if you're doing something that renders eye-contact impossible? What about times you do something sexual for someone because you love them even though it's not really your thing? All this stuff is resolvable, but the principle matters and quite obviously, one's chances of having better, more mutually-fulfilling sex rocket compared to the model where one person (usually a man) initiates, everything just happens and both parties hope for the best.

My top tip: Being British means talking out loud about sex is almost impossible without giggling - just now I'm recovering from the effect of having put the words sex and rocket next to each other in the same sentence. Reading and participating in written discussions, both public and private, is much easier than sitting around with friends and saying, “So, you know when you really fancy the thing with the bubble wrap and the hedgehog costume, but your partner's busy reading Ovid...?”


7. Use The Word Rape To Describe Rape

One of the big problems we have even talking about rape is that our culture has an ideal model for the crime which (roughly) features a virtuous young single woman walking along in daylight when an armed stranger leaps out from nowhere and drags her into the bushes. We consider a rape a crime which necessarily
  • results in significant physical injury 
  • results in long-term trauma with immediate effect 
  • results in a very specific mix of rational behaviours (e.g. reporting the incident to the police immediately) and irrational behaviours (e.g. being very upset all the time, refusing to leave the house and taking a vow of chastity). 
There are few other crimes when we question whether wrong-doing has taken place on the grounds of the victim's reaction to events - “All the evidence suggests your husband was brutally murdered, but you're now eating normally and you're able to tuck your children in bed at night without breaking down in tears, so this 'murder' can't have been as bad as you make out.”

Some rapes are much worse than others, involving more violence, greater fear of death, more than one assailant and so forth. This doesn't mean that other rapes are not serious or not actual rapes. Often, victims struggle to use the word rape because they don't feel what happened was quite bad enough and because they are deeply invested in avoiding any drama. Dissociation is a common reaction to the shock of an assault, which can mean that, on auto-pilot, the victim is sociable and friendly with the rapist in the immediate aftermath. Together with domestic violence – of which rape is often a feature – victims often see a choice between carrying on with things as they were and getting back to normal as soon as possible, or else identifying as a victim, condemning their friend/ lover/ spouse/ family or community member as a rapist and disrupting every aspect of both their lives.

So often accounts of rape begin, “I wasn't raped, but this thing happened to me once where I was forced to have sex against my will...”

This isn't victims' fault, and nobody should be pressed into using language about their own experiences which they don't feel comfortable about.  However, the rest of us need to get this right.

We generally struggle to use the word rape or even sexual assault when it is appropriate. The term “had sex” is overused in reporting of sexual crimes, even when discussing the abuse of young children. Julian Assange is currently suspected of rape, but the word is rarely used when discussing his case, regardless of anyone's stance on his as-yet-uncertain guilt.  In the coverage of an upcoming film about Mike Tyson, I've heard reference of “his time in prison” but not the fact that he was put in prison for rape (which in most minds, is towards one end of the huge spectrum of things a person can be imprisoned for). I've even seen film reviews that refer to "rough sex" when the only sexual content is an unambiguous rape.

I don't believe that this is because people don't know what rape is.  I just think we're massively squeamish about the word, like we are about some anatomical words - rape is perhaps a word we wouldn't use in front of our grandmothers. But this is part of the reason why people can commit rape and frame what they do in the language of say, men's magazines. If we consistently used the word rape to describe any time someone has sex forced upon them, it would make it far more difficult for rapists to rationalise their future crimes.


8. Avoid humour around rape and sexual aggression.

Many jokes about rape and sexual aggression muddy the water about the acceptability of these behaviours.  Sure, people laugh because these things are shocking to say and hear, but they are rendered less shocking by the saying, hearing and laughing. Jokes don't make people rape, any more than racist jokes make white people go out and beat up black and Asian people.  However, I guarantee that rapists, like violent racists, are much more comfortable in an environment where the joke is on the victims of their violence.

Meanwhile, I think this saga, which continues into the comments, demonstrates how shocking it can be to people who consider themselves harmless and decent to realise the hurt, distaste and profound mistrust that this kind of humour can elicit from people who have experienced, or are at higher risk of experiencing, sexual violence. You may be free to joke about whatever you like, but you will be judged for your humour and you will help create environments which make some people feel safe and others feel alienated. It's worth considering what kind of people you want to reassure and what kind of people you want to push to the edges.

I'd include in this, don't use the verb rape to mean kick ass, thrash, wipe the floor with etc., in a competitive context, e.g "Chelsea are going to rape Man U this weekend."  Stephen recently reported reading the phrase "raped by the postage" to refer to someone being charged high postage. I mean, just no!



* This really shocked me, because Mum is in her late fifties, is made of very stern stuff and would probably respond to the same story coming from another woman with a cunning plot to bring about the creep's humiliating comeuppance. But when it was her own case, she reverted to a young girl second-guessing herself about leaving a party to avoid a boy who just groped her - except that among her machinations, she argued that because of her age, the man couldn't really mean anything sexual or pose any kind of threat.

** Not all women have any interest in male attention, but many women are socialised not to rock that particular boat, regardless of sexuality.

Tuesday, August 07, 2012

What I might have learnt from Reality TV

For many years, I didn't watch television and it was during this period that Reality TV became ubiquitous.  Friends sometimes sent me videos of comedies and Dr Who and when BBC iPlayer came along, I got to see a lot more telly, but it never occurred to me to watch any of this reality trash.  Then I began living around people who'll watch whatever's on - you know, what is actually being broadcast at this very moment - and with Stephen, who is an extremely intelligent, cultured and widely-read classicist who enjoys Come Dine With Me and other programmes of that ilk. Usually, but not always, programmes that involve some cooking and some bickering.

Reluctant at first, I gradually realised how very useful Reality TV would have been, had I only been exposed to more of it in my youth. I have generally been very lucky with people; I've always had a few good friends and a considerable number of very lovely people to speak to.  But like everyone, I have been stung and I think Reality TV could have helped me avoid some of these stingings.

The first and greatest lesson illustrated so extensively by Reality TV is that decent people, with all the basic virtues in place, rarely need to protest their decency. This realisation could have saved me a great deal of heartache and confusion, had it only come earlier. I'm now able to recognise a particular vice whenever TV contestants or new acquaintances say a little about themselves and include statements like
"I pride myself on being honest." (I am not at all honest.)
"I'm not interested in playing games." (I have a cunning plan.)
"What you see is what you get." (I am manipulative and I judge by appearances.)
More than once, I've met someone who has mentioned, repeatedly, how very important honesty was for them; how above all else, at whatever cost, they aimed to be honest. Then later on, I realised they weren't. I'm not talking massive swindles here, but petty dishonesty, exaggeration, making impossible promises and giving different accounts of the facts to different people. I have had friends like this, and how much damage it has done depended on whether I ever actually had to rely on them for anything.

It doesn't occur to ordinarily honest people to say that they're honest, because honesty is fairly normal.  Describing oneself as particularly honest is a little like boasting, “I don't steal from anyone.”

Then there's the use of honesty as a pre-emptive justification for bullying behaviour;
“I say it how it is.” (I go out of my way to be offensive) 
“If people don't like to hear the truth, it's not my problem.” (I like to tell people things they don't want to hear). 
“I can't stand people who can't take a joke.” (I will hide behind humour should anyone call me out on my behaviour.)
Honesty isn't about saying whatever passes through your head. Lots of things pass through my head. Apple crumble! See? A lot of those things - like that next thing I thought of just now - would cause me a great deal of embarrassment and shame if I said them out loud, as they occurred. But most of the time, that's not a problem for me or the people around me. I sometimes do express some of my strange or foolish thoughts, but on the rare occasions that other people are upset by them, I don't respond with, “What's the problem? I'm just saying it how it is. That is an ugly dress and you do look a little like Yoda in high heels.”

Adult bullies frequently use honesty as an excuse to verbally abuse those around them, as if the possession of an honest opinion is like a having a gestating alien in our chest, something that's going to burst out during dinner whether we like it or not.  It's really not.

Incidentally, there's a world of difference between not saying cruel or offensive things and avoiding important subjects for fear of offending people. Vigorous honesty and openness is probably as often used as a mask for bullying and manipulation as social etiquette and familial obligation ever were.

Meanwhile, there's

“People either love me or hate me.” (My mother loves me, grudgingly, on a good day, when she remembers me as a baby and forgets the monster I grew up to be.)
The only people who truly divide opinion between extreme camps of adoration or disgust are very famous people, who we know by their persona or politics rather than personality. Socially, nobody is the human Marmite. Mind you, even Marmite isn't the Marmite Marmite, given that I quite like it once in a blue moon and my sister isn't especially keen but doesn't mind it. So it seems very unlikely that, even if a Reality TV contestant were to smear himself with Marmite - and that's probably happened on Big Brother before now - that people would either love him or hate him. Probably nobody would want to invite him into the hot tub.

However, if someone behaves badly and is mean to other people, he may be universally disliked. I have known ordinarily awful people who divide others between those who can tolerate them and those who can't tolerate them, but that's hardly love or hate.

Regardless, if you suspected that you were regularly eliciting an extreme negative reaction from people, even if other people thought you were great, you'd probably think to work on the negative bit, work out what was going on and, if you could, sort it out. None of us can please all the people all the time, but most of us can manage to avoid acquiring enemies within five minutes acquaintance.

Finally, there's
 "I am a real eccentric." (My hobbies are gardening and sudoku, which I do fully-clothed.)
 "I've always been a bit of an outsider." (I've had a very privileged life, of which I am ashamed.)
"I'm always making people laugh." (I have this one joke about a man with paper trousers.*)
There are all number of traits which it is so unwise to attribute to yourself.  True eccentrics are all but oblivious to their eccentricity - that's part of what makes them eccentric. Almost everyone feels like a bit of an outsider, until they don't, but only people on the inside have the privilege to talk about being on the outside like it's a good thing. And comedians, even truly hilarious intelligent comedians, make their job ten times harder by telling people that they're going to be funny. All this stuff is like saying that you're drop dead gorgeous on a dating site. It's stuff you have to leave for others to judge.

Of course, as well as being better able to identify vices and flaws in others, Reality TV has taught me how to describe myself:
This is me. I am what I am. I am all about keeping it real. Some people may like me, some may not, but most are likely to react with something just the positive side of indifference. Some of those opinions may change after they've come to know me better.

* What do you call a man with paper trousers?  Russell!

Saturday, July 21, 2012

We are engaged!

View towards the beginning of a cloudy sunset
across a somewhat pewter Irish Sea.
On Thursday evening, we went to the seafront to have fish and chips. While his Dad went to get the food, Stephen and I sat in the shelter looking out to sea and got engaged. This is all very exciting! We both became all trembly and weird and needed a long lie down afterwards. Everyone has questions we don't have the answers to yet, but the main one is about when we're getting married and the answer is some time next year.

There are pictures of us and our rings but we're on mobile broadband for the next few weeks so I shall ration you to one photo which is the view we had from where we were sitting.  I'll update Flickr when we get back to civilisation.

Tuesday, July 10, 2012

10 Things Fiction Writers Need to Remember About Disability (6-10)

(6 and 7 are sexually explicit. Keep calm.)

6. There aren't many reasons for disabled people not to have sex


...let alone romantic relationships. In likely order of prevalence:
  • Not having a suitable partner at this time.
  • Psychological reasons, e.g. past trauma, depression, low confidence and many others.
  • Asexuality, which like all sexualities and sexual proclivities, can coincide with disability.
  • Sexual acts or orgasm causing physical pain or danger.  
None of these are unique to disabled people, but they may all be more common in disabled people. Although disabled people fight hard against being seen as asexual (although I'd argue the problem is being seen as sexless, which is something else), the few openly asexual people I've come across have happened to be disabled. I don't know whether having one outsider identity gives us the confidence to explore and embrace other identities which might otherwise have remained hidden.
Reasons for disabled people not having sex do not include:
  • People whose legs don't work can't have sex.
  • People whose genitals don't work can't have sex.
  • People on the autistic spectrum are not interested in sex. 
  • People with intellectual impairments are not intelligent enough to have sex.
  • People with mental ill health are only interested in really weird sex.
  • Medical conditions, injuries and pain make people disinterested in sex.  
  • Disabled people aren't attractive enough to have sex. 
  • Disabled people don't experience sexuality. 
The way sex is sometimes written about, you get the impression that some people (almost always straight, non-disabled people) conceive sex as merely the baby-making act, in the missionary position, and anyone who can't do that isn't having sex. Anyone who can't penetrate or be penetrated can't have sex. Anyone who can't orgasm can't have sex. Any man who can't sustain an erection can't have sex.

Folks, not only is none of this true, but accepting this fact is likely to improve your own sex life, however you happen to be equipped.


People often remember Lady Chatterley's Lover as a story about an aristocrat who has an affair with the gamekeeper because her husband has become paralysed. In fact, D H Lawrence wasn't nearly so clumsy.


Clifford Chatterley is emasculated, in his own eyes, by his paraplegia, the events of the First World War and the social upheaval in its aftermath (being a Lord isn't quite the big deal it used to be). Constance is still interested in him, but he rejects her. Clifford is very much wedded to the Sick RoleThere's talk of physical improvement, but Clifford dismisses the signs. The doctors say that he should be able to father children, but he tells Constance to have an affair and conceive a child - an heir - with someone else. He can't have sex any more because he can no longer meet the standards of a very particular kind of masculinity


Lawrence makes it very clear that it is not Clifford's impairment which destroys his sexual relationship, but Clifford's reaction to it and the massive sense of rejection and frustration Constance is left with.  If Mellors had a spinal cord injury, he would most probably continue to have a rich and fulfilling sex life, and given the obstacles against being a wheelchair-using gamekeeper in the 1920s, would probably spend even more time weaving flowers into people's pubic hair.  Maybe marketing his technique as a kind of eco-friendly no-wax-necessary vajazzle. 

On the subject of private parts:


7. Focusing on disabled people's penises is objectification.

In the second season of the US rip-off of The Killing (no, I don't know why we're still watching either), the freshly paralysed mayoral candidate Darren Richmond is beginning to come to terms and look towards the future, when he suffers an inevitable humiliation. We already know that his penis is now a special disabled penis. He is incontinent and doesn't notice when he is catheterised (by a beautiful young nurse - which makes it much worse). We also know he needs help in the bathroom - from women.


Then, chatting to another beautiful young woman, Richmond urinates upwards and doesn't notice until the hotty draws attention to the massive puddle in the lap of his hospital gown.


I'm no expert in spinal cord injury (especially as I always have to correct cord from chord), but I am guessing that someone with complete incontinence rarely gets a full bladder and someone with no feeling in their penis is unlikely to get a psychogenic erection. But apart from this, The Killing doesn't feature other characters going to the toilet, menstruating, having sex or even eating or drinking very often. There's all sorts of problems with pacing in this series (goodness me, are there problems!), but almost everything we've seen with Richmond in six or seven episodes involves repeated and sexualised humiliations*.

The Man With The Plan in Things to do in Denver when you're dead speaks about the hard-ons he can't feel. The paralysed veterans in Born on the Forth of July get together in order to hire women to have sex with them. This isn't the alternative to presenting disabled men as sexless - any more than Horny Nymphos 3 is the alternative to presenting women as sexually passive.

The curiosity surrounding the disabled person's penis is handled much better in The Book Group, where it is only other people who imagine that Kenny's penis has magical and complex qualities. However, really, if the fiction doesn't focus on the genitals and bodily functions of other characters, then it is unnatural to focus on someone's genitals just because they're disabled.


This is kind of like when you have a cast of white characters with one black character, and you write several paragraphs about the black person's skin, hair and accent, when nobody else's skin, hair or accent is remarked upon. Yes, yes, there are contexts where this would be pertinent, and there are contexts where it is pertinent to talk about a disabled character's penis. But in the absence of such context, it's objectifying. The treatment of Richmond in The Killing is the writerly equivalent of approaching a wheelchair-user in a pub and asking him if he can get it up.


If you want to be a right-on writer who recognises that disabled people have sexuality, then treat these character's sexuality and body parts in the same way as you treat everyone else's. Which sometimes means ignoring them completely.


8. Not all disabled people live in accessible accommodation, but most of us will if we can.


I can't remember much about Notting Hill, but I do remember the lovely Gina McKee, who I had a crush on at the time, playing the very rare role of a female wheelchair-user. I can forgive her the rest of the film for that, including the fact that this wealthy middle-class woman - so wealthy that she lives in a two storey house in a (even then) very fashionable part of London - has to be physically carried upstairs to bed every night by her husband. I think we were supposed to think, "Ah, how sweet, how romantic, what dedication!" but instead I thought, "Ah, I imagine the lovely Gina is as light as air itself! But why would such a wealthy wheelie live in a place with stairs?"

This is so common in fiction, however wealthy a disabled character is. In Gattica, Jude Law's paraplegic character is forced to crawl up his own spiral staircase - yes, this is a dystopian disablist future, but he is rich and it is his home. Even some disabled villains, who you know would be prepared to flout any planning regulation that got in their way, nevertheless fail to make their homes and underground lairs DDA-compliant.

It is as if some writers are afraid that we're going to forget that a character is disabled. The answer to this is to ask the question, Would it matter if we forgot?  Is being disabled so central to who this person is?  If so, if they are the disabled one, does anyone exist like that in real life?

There are lots of disabled people who live in accommodation which isn't fully accessible. I spend half my time in a building with stairs which, while I can physically get up and down most of the time, are a real bane. However, this isn't my house or somewhere I'd chosen to live.


9. Disabled people know other disabled people


Women and members of minorities are well used to tokenism in fiction; worlds that look like our own but mysteriously feature only one woman, one person of colour, one gay person etc.. But the idea of disabled people being acquainted with other disabled people, let alone some sense of community among disabled people outside institutions is extremely rare indeed (I have never come across fiction which acknowledges the disabled community as a social and political movement, although I can kind of understand that - Marilyn French's The Women's Room is the only successful novel which significantly features any egalitarian movement).

All the fiction that features community among disabled people I can think of is set in or around institutions; care homes (Skallegrigg, Inside I'm DancingBubba Ho-Tep), schools (The Drool Room) and hospitals (The Officer's Ward, One Flew Over The Cuckoo's Nest and the brilliant Taking Over The Asylum).

Otherwise, the only place where disabled people live and work in close proximity are for the enemies of Bond, Batman and all those other superheroes - disabled villains are invariably equal opportunities employers. To be honest, right now, I'm struggling to think of other fiction where two disabled characters are friends. Oh yeah, Forest Gump. Great.

However, disabled people meet in all kinds of circumstances - we are everywhere, after all - and  for a great variety of reasons, most of which have nothing to do with disability. We're just about.  Disability sometimes means we have stuff in common - I find other disabled people are generally more likely to fit in with my passive social life - but even when not, two disabled people are no less likely to get on and be friends than any two people. We're slightly more likely to be related to other disabled people.

Whilst in real life, disabled people are sometimes introduced to one another because we are disabled, the oh-so-special tragic heroic status of disabled characters in fiction usually means that they must be the only one around. After all, if there's a blind person, a double amputee and someone with MS living in the same street, none of those things is all that tragic or all that special. Which they're not!

 And finally, perhaps most importantly


10. Disability is not a conflict that has to be resolved.


Honestly.  It's not!  Most disabled people live into old age and do not become non-disabled.


A personal little rant.  Do you know how it feels when other people understand your life as a battle which you either have to persist in fighting, struggling, trying to be other than you are, or else give up and accept defeat?  Maybe you do. It's wearing. It's also incredibly frustrating when you have a reasonable life expectancy and yet your health is not likely to dynamically improve. And if it did, it would take ages and happen behind the scenes. Meanwhile, you have a life to be lived and all sorts of dreams and schemes which you want to get on with - dreams and schemes made a fair bit more difficult by your circumstances - and yet other people think you should be putting all that on hold and concentrate on being an ill person and fighting your illness until you can be a normal person once again! Rant over.

Sometimes disabled people are cured by love (The Boy In the Bubble, As Good As It Gets, Avatar) or friendship (Heidi, The Secret Garden) or just by being such brilliant mad geniuses that the genius magically overcomes the mad (A Beautiful Mind, Proof). But overwhelmingly, disabled people are cured because they are good. Keep being good and sooner or later, you'll be a non-disabled normal Norman. Disabled villains never get cured. They almost always die (although of course, that doesn't necessarily finish them off).

Lots of good disabled characters die as well (by good, I mean virtuous - quality is quite another matter), but our deaths are bitter-sweet. Our deaths help other people to appreciate their lives in some way. And quite frankly, our deaths happen because our lives are seen as less valuable or more miserable than the lives of others, so we are expendable and maybe death is a release anyway.

Our deaths are romanticised, often without any particular medical cause. Even in the brilliant Skallergrigg, a main character with cerebral palsy appears to simply fade away while still a young woman.

I shan't accuse Dickens of starting it, but despite a wealth of disabled characters, I think the only one that survives and remains disabled is Esther in Bleak House who remains scarred by smallpox. Okay, so maybe few others with mild disfigurements and speech impairments, but nobody with so much as a limp. Smike dies. Everyone with mental illness dies and usually soon into their illness. Anyone vaguely weak and pretty dies (in Victorian times, weak and pretty was itself a medical condition). Tiny Tim is going to die but is now going to get much stronger (although the book doesn't take this as far as certain films do - I enjoy Scrooged where the Tiny Tim of the TV production Bill Murray is overseeing is played by an acrobat).

Of course, there are a few good stories to be told about people coming to terms with impairment (The Officers Ward is a good example of this - I usually hate this kind of thing, but that was really beautiful). However, as I've said, most of our stories have nothing to do with our impairments. Most of our stories began when we were already disabled, and concluded without death or medical miracle.



Here's a link to 10 Things Fiction Writers Need to Remember About Disability (1-5) - the comments now feature a vast number of disabled fictional detectives I'd not heard of before.

Meanwhile, Feminist Philosophers have a post up called Moving Beyond The Stereotypes about disability in fiction, complete with lively comments thread (although it does descend into a row about what literature is - that's philosophers for you!)



* In between writing this, I caught up with several episodes of the Killing and you'll be pleased to learn that, I don't know, 72 hours after being shot and paralysed, Richmond has now become an inspiration hit on Youtube by playing wheelchair basketball badly. Super.

Thursday, July 05, 2012

10 Things Fiction Writers Need to Remember About Disability (1-5)

1. Disabled characters can be at the centre of stories which aren't all about disability.


I made a very similar point in my 10 Things...About Sexuality only it is even rarer to read stories with disabled protagonists which aren't all about disability. This despite the fact that there are so few good stories all about disability. In fact, I'm not sure I can think of any good stories where disability is the main event, although there are a fair number of rubbish stories which use disability as a grand metaphor, either for the challenges of life, or else mortality and the fragility of all things. Funnily enough, there's nothing metaphorical about our lives.


Disabled characters can be at the centre of brilliant stories because disabled characters are people. It's a matter of Why not? There are stories where the protagonist couldn't be a wheelchair user, or has to be a fluent reader, or has to great in social situations, or has to be in good physical health. But there aren't many stories which require a protagonist to be non-disabled. I'm not suggesting that writers should ever consider a character and think, "Would this still work if we gave this guy a limp?"  Over the last fifty years we've seen a massive shift in writers of film especially, but also books, no longer assuming a protagonist has to be a straight white man (although in films and many genres of literature, most of them still are). We simply need to add non-disabled to the trashcan of default settings that need not apply. 

Consider the history of detective fiction. If you think about all the fictional detectives from Sherlock Holmes, through Miss Marple, Lord Peter Wimsey, Philip Marlow, Maigret, Falco, Inspector Morse, Columbo, Adam Dalgleish, Cadfael, Rebus, Wallander, back round to Sherlock again, and the hundreds of others - I could probably name a hundred fictional detectives myself and this is by no means a specialist subject of mine. I can think of two disabled detectives; Ironside and Saga Norén from
The Bridge, who has Asperger's (some people argue Holmes has Asperger's, but only the sort of people who think a logical mind minus a complicated love life equals a diagnosis). There are almost certainly more, but why aren't there a dozen? The role of the detective lends itself perfectly well to a person in middle-age, who has lived a little, and maybe got sick or injured or traumatised in the process, or fought their way through in the face of some impairment which caused others to doubt them. A bit of an outsider looking in. Maybe someone with time on their hands. Someone who, like Miss Marple, Lord Peter Wimsey, Cadfael and others, is mistakenly presumed to be harmless and so allowed to observe people with their guard down. That's us


And, after all


2. Disability can be part of the plot of great stories. 


There's no argument that disability can't be part of the plot of really good stories which aren't all about disability. Rear Window is a smashing story about a man stuck in one place (although in the 1954 original, James Stewart's character had only broken his leg, there was a later version starring the quadriplegic Christopher Reeve). One Flew Over The Cuckoo's Nest is about the mechanics of oppression. Skallagrigg and to a far more tedious extent Avatar are about the transcendence of physical limitations through technology. Covering several decades in the life of his protagonist, Ira Socol's novel The Drool Room marries this and the above point together; the significance, sometimes dominance of disability over the narrator's life and therefore the story ebbs and flows. Which is how it often is. 

In these stories, disability is not a metaphor or a symbol. It is a real thing, which leaves Jeff stuck in one place, watching events that would otherwise be ignored. It places Chief and the others under the total power of Nurse Ratched. It provides young people with the pressing need to find avenues of escape, to carve out their own, unprejudiced world. It makes a grown man want to turn into a big blue giant - and who amongst us can say we haven't felt the same?

In common with most disabled people, disability is at the very most a small feature of some of the dramatic or interesting stories of my life. The story of my impairment isn't very interesting. The story of my coming to terms with it is long and tedious - although a little CGI might raise it a notch above Avatar. But I have lots of other stories to tell. We all have lots of other stories to tell.



3. People with long-term impairments or chronic illness are not fascinated by their own condition or their own symptoms.


I once read a thriller where the hero ex-cop turned vaguely defined bodyguard/ private investigator/ hunk for hire had arthritis. Kudos for having a youngish physically active man with a condition associated with old age. However, during lulls in the plot, the hero would contemplate the morbidity rates for arthritis in the US. Seriously - not just, "Arthritis is a common condition which, contrary to stereotypes, effects both young and old." but "He knew that 1 in [however many] Americans has arthritis, of which 1 in [however many] are under forty. It effects men and women by a ratio of [whatever]." and went on like that.

The only lay people who know these kinds of stats are people who have recently researched a condition, happened to remember a statistic that surprised them or someone actively involved in campaigning or research of some kind. Despite its many faults, Rain Man had a rare character who thought and talked a lot about statistics in a way that made sense, but most people (including most autistic people) are not like that.

For most people with a chronic condition, so much medical information becomes deeply deeply tedious. We hear or read it over and over and, beyond that initial period of relief (oh, thank god, it does have a name!), understanding and adjustment, it becomes just a lot of facts that affect us directly, but which we have no power over.

Similarly, most people who have lived with a condition for more than a few years are decidedly disinterested in their symptoms. Reading the blogs of disabled people provides a good demonstration of this. People who think and talk about their health a lot are people who
  • Haven't had these impairments very long (a few years or less)
  • Haven't had this diagnosis long, or are still looking for a diagnosis
  • Are in some kind of crisis with their health or with other people in relation to their health (discrimination, benefit or insurance problems).
  • Have obstacles to talking openly about their health to most people in their lives, e.g. they have a highly stigmatised condition, they have something difficult to vent about 
  • Want to raise awareness, advocate for research etc. or 
  • Don't have much else going on in their lives (I don't meant that in a derogatory way; some people are so ill, illness is all that's going on). 
I have been ill for sixteen years. If someone asked me to list all my symptoms, I wouldn't have a hope - I don't think about them and if I were to think about them, there are many things I'd forget because this is just normal for me. I have heard and read various stats about my condition in many different and sometimes dramatic contexts, but I can't remember any of them.


However, if my health gets worse, and especially if it deteriorates in a way that frightens me, then I become an expert in my body and illness and notice things which have nothing to do with anything.

If a double amputee wakes up and notices that the duvet is flat at the end of the bed where their feet used to be, there's got to be some reason. If they lost their legs ten years ago, came to terms with it, moved on to a full and happy life, then it's probably the writer, rather than the character, who is noticing.



4. Disabled people are not all young, white, straight, affluent men.


Although the vast majority of disabled people in fiction are. It's as if identity is a cub scout uniform but with very limited room for the badges - one, two, maybe three if you sew them on right close to one another. People joke about "disabled black lesbians" as if they simply don't exist (I know three), and writers write as if it is impossible to be a member of an ethnic minority and disabled, or gay and disabled. It's fairly rare they manage female and disabled, and disabled women make up a little below ten percent of the population. 


We're all used to the identity stuff,  but the affluence one is quite weird. While there's one cultural stereotype that says disabled people are universally poor, unemployed and dependent on the charity of others, this only applies in fiction if the disabled person is a relative of a main character - a burden on the main character, to provide crises and obligations. Such disabled characters are generally not complete characters in their own right, more obstinate scenery or yet another human metaphor. 


When a disabled person is a character in their own right, writers usually sweep away all that disability is expensive and an obstacle to financial success reality and make them rich. Sometimes filthy rich, as if to make some vaguely ironic point, "Well, they're rich and powerful, but what use is that when they can't walk up stairs?"  This is especially the case with disabled villains, everyone from Mr Potts to Blofeld, but it's also the case with many of the minority of disabled good guys, like Professor Xaviar, who happens to have inherited a fortune. 


My current favourite disabled villain is Mr Gold, a.k.a Rumplestiltskin in Once Upon a Time, which I'm loving and Robert Carlyle is rocking. But in that case, it makes sense he has money - he can weave straw into gold, after all! That show is so good, I'm half expecting that they'll explain his use of the cane some super way, as opposed to the obvious and somewhat disappointing, He uses a cane so we all know he's sinister.


On which subject...




5. Disabled people go bad for a reason.


As you may have gathered, I don't have a problem with the fictional archetype of the disabled villain. But only proper honest megalomaniacs or their imposing henchman - disabled creeps are a horrible and fairly hateful stereotype. [major plot spoiler until the end of paragraph] For example, The Da Vinci Code features not one but two murderous disabled creeps; self-mutilating religious zealot Silas, whose Albinism is made much of (though strangely no evidence of visual impairment) and the irreligious zealot Teabing, who has post polio syndrome and uses a cane. It's all about symbols, apparently.


Another horrible example from film in recent years is a character played by Mackenzie Crook in City of Ember, who is introduced by his limping gait and proceeds to be the creepiest creep you ever had the displeasure of being creeped out by - in a children's film. For children. At least few of who will walk just like that.


Ian Fleming had the hang of this. If you're non-verbal, a snappy dresser and have good aim, or if you're extremely tall and ate so many Jelly Babies that your teeth have had to be replaced with stainless steel, then what are you going to do? It's either henching or B&Q, and henchmen get to travel the world.


The need for motivation applies especially to villainous characters with mental ill health. Cases where an illness, in the absence of any other factor, makes a person do very bad things are fantastically rare in reality, but pandemic in fiction. And it's a cop-out - I have read too many detective novels (I could stop that sentence there, but I won't) where I'd been weighing up the motives and opportunities of the suspects for three hundred pages, only to find out it was someone without any motive except that they're a little bit bonkers - indicated by a sudden change in character, or the chance discovery of a shrine to Justin Bieber in their potting shed. 


Given the tremendous and sometimes deadly stigma experienced by people with mental ill health - especially scary diagnoses like schizophrenia - writers have a pressing responsibility to get this stuff straight. Not that people with mental ill health aren't capable of doing very bad things, but it has to make some kind of sense.   A diagnosis is never a motive for murder or megalomania.



See also, s.e.smith's recent post Writing the Other

Friday, June 22, 2012

Care and Teamwork: A Ramble

The one massive practical advantage of Stephen's and my relationship is that we are able to do many things for each other that someone else would have to do for each of us otherwise. We share tasks and, working at a gentle pace that others would consider deathly slow, we achieve things together which we wouldn't have a hope of managing by ourselves. We are effectively one another's carers, without ever thinking about it that way, except just now when I said it. 


There are all kinds of unique and personal things about our relationship that makes this work. We both understand pain and fatigue and share a great deal of knowledge about pacing, resting properly, easing painful parts, keeping warm (but not too warm), hydrated and fed with the minimum of effort. We love food and take pleasure in preparing things the other person will enjoy; some of our sandwiches are works of art. We are very physically affectionate and helping one another wash, dress or undress merges with the fondling and stroking that happens anyway.


And if that sentence made your stomach turn slightly, it illustrates a very important point. But a point I will get back to after I've talked about Stephen's parents. 

For the last twenty years, Stephen's Mum has been severely disabled and is rarely able to leave the house. Stephen's Dad is her carer, and is relied upon to do any shopping that can't be done on-line, to run errands as well as to do lots of lifting, carrying and other tasks around the house. But honestly? This is a very egalitarian marriage. There are all kinds of things that Stephen's Mum does, especially when it comes to technical things or organisation, which Stephen's Dad would struggle with. Each relies on the other and each enables the other to have a good quality of life. 


Outsiders sometimes express sympathy for Stephen's Dad, for the burden of care he must carry. But if something happened to one or other of them, whoever was left would need outside help in order to cope and carry on. What makes Stephen's Dad a carer and Stephen's Mum merely a wife is the difference between the nature of the help they each need. 

So care is often part of the teamwork that happens between couples, friends and in families. I've written before about the dangers of defining it as something you deserve a medal or financial reward for. That stuff bleeds into and swells the idea that disabled people are burdensome - that a disabled friend who can't physically drive is magically more trouble to give a lift to than another friend who never passed their test.


But not all human relationships are the same. My parents have been very happy together for almost forty years (despite what they claim), but I wouldn't fancy their chances if one needed intimate care from the other. It's not a matter of either being too independent or impatient, it's a very complex thing that would make that situation extraordinarily difficult. I have received intimate care from both my parents and I'm not sure I could survive if that was the situation long term. I think it is a very common experience for parents of disabled adults to tend towards reverting back to being parents of small children if they need help with basic things. And that's presuming they're the kind of parents who noticed you grew up in the first place. All kinds of entirely tolerable factors in the relationships you have with your parents can become raging nightmares when you need them to help wash your hair. 

So not every disabled person who lives with someone else, even presuming that they are loving and not in the least bit inclined towards abuse (given that half of all disabled women will experience domestic abuse in their lifetime), can hope to receive care from that person. Some people who are good compassionate people make terrible carers, in the same way some decent people happen to be terrible partners or parents (well, not terrible terrible, but incompetent, unreliable or distant).


Meanwhile, not every disabled person can cope with receiving care - especially intimate care - from friends or members of their family. For some it's absolutely impractical, unless someone volunteers to become their shadow and that's not necessarily healthy. But for others it is simply inappropriate. For example, almost everyone has some boundaries around touch and nudity and it's often easier to cope with that stuff around people you don't know very well. 


And of course, some people live alone. Some people like very much to live alone. Others don't have a choice.

I have provided care that felt more like work in the past, in a few very different circumstances. It felt like work because either
  • The care interfered with my ability to eat, sleep or rest when I needed to or 
  • The care was more than I could manage without significant physical suffering or
  • My efforts were entirely unappreciated (ranging from no word of thanks to verbal abuse) or
  • All of the above.
And frankly, nobody should have to do that kind of thing without pay or a lot of help and respite. Someone who does that without pay or help is not a hero, but a victim. Not a victim of their loved-one's illness or the burdensome disabled person (though as my experience suggests, some of us suck) but of a society which isn't fulfilling one of the chief functions that society's are supposed to do: sharing the load when someone is in trouble. And while Samantha's tragic story is from the America of yesteryear, partners, family members and still sometimes children continue to be asked for much more than they can give in the UK today.

And there is no conveniently crisp line between work people do for pay and things people do out of love, kindness or social obligation. There never has been. You can pay someone to perform pretty much any act that most of us prefer to do for only ourselves and the people we love; people have been employed to cook, clean, have sex, provide massage, breast-feed, even be friends with someone (have you checked out those people? Brrrr.) Meanwhile, people volunteer to do paperwork, people phone-lines, build houses, pretty much any task which one would usually associate with paid work. The help disabled people need may be essential for life or a basic quality of life, but those tasks have no particular status.

This is, as the title warned, a ramble. I don't have any dynamic answers about how we might sort out even first principles when it comes to reforming how care is provided (or most often not provided) in our country. But I think the nuances are vitally important. It's the nuances that create the problem - the over-reliance on family or community to provide care, because families and communities are very good at providing lots of kinds of help and support for free. But the nuances are real, and to ignore them is to  reduce disabled people to units of consumption.

While I'm here and on this subject, I really love the look of CURA. It's kind of like a social networking solution to organising the little tasks which friends, neighbours and family can do to keep a person going, and save time and energy for primary carers.