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.

10 Things Fiction Writers Should Remember About Sexuality (6-10)

6. Kink is not depravity

Particularly the great canon of British Murder Mysteries, to spot the slightest hint of kink about a person's sex life - as little as an ostrich feather or a jar of Marmite on the bedside table - is to know that this character is either going to end up the tragic victim of a fatal tickling-gone-wrong or they will become a fishnet-stockinged killer who batters his victims to death with a neon pink dildo.

It's not that kinky people can't commit murders, but nor is it the case that people who know Karate don't go round beating people up. Kink is a lot like martial arts; both involve behaviour which could, potentially, seriously damage people - and both attract a minority of people who want to seriously damage people - but most people who are into these things are extremely conscientious in their desire to avoid that and channel stuff that's a little bit dark and spikey into something mutually enjoyable for everyone concerned. When the lines between full consent, reluctant co-operation and coercion are muddied or ignored and most folks seem uncomfortable to confront the problem, it's very often kinky people who tirelessly discuss enthusiastic consent.

Of course, most real life murderers you hear about are tragically dull, with very domestic, banal and shallow motives. I can understand why writers want to spice things up, and there's nothing wrong with giving a murderer sexual kinks, if you're into that kind of story (and goodness knows, lots of people are). But this is the twenty-first century; who hasn't dressed up as a hedgehog, wrapped their partner in bubble-wrap and proceeded to pop all the bubbles? A character needs a little more than common or garden kink to point to murderous inclination.

More seriously...

7. Depravity is not normal

Sexual abuse and assault are all horribly common, but they are often handled very very badly in fiction. They are often made to seem like the normal consequences of normal things, such as being an attractive woman, being a teenage girl who interacts with adult men, being a man in prison etc..

Sexual violence happens to normal people, all kinds of people, but sexual violence isn't normal behaviour. It is motivated by a desire to exert power, to exact punishment, to control or humiliate. Sex is in this mix, but it's never ever about fancying someone so much you can't help yourself.  Many people who are capable of very bad behaviour are not capable of rape, whereas some people who manage to be decent most of the time are capable of committing rape in circumstances where they can get away with it.

Sexual violence should not be a taboo subject in fiction, but it must be handled with care. For one thing, it must be acknowledged for what it is, when it happens. I once read a dreadful scene by a bestselling novelist where the woman resisted to the point of kicking the man in the balls before submitting, which was referred to the first time the couple "made love" for the rest of the book. I was so horrified at this that I put the book down and told my Granny, who I happened to be with at the time. Granny was equally shocked, (maybe even more so that I had just explained all that to her).

But I think the biggest mistake writers make is to fail to examine the motives of perpetrators; they write as if sexual violence is something that happens to people, as opposed to something people do to other people. Not that writers need to focus on perpetrators, only not to present rape like a piece of tremendous but random bad luck.

See also Ana Mardoll's excellent Twilight: Rape Narratives, Good and Bad from earlier this week.

On a far more positive note...

8. True love is a real thing.

It is often said that we live in a culture which is obsessed with sex without being sex-positive. I'd say the same about romantic love. Romantic love stories are everywhere, we suffer from a cult of coupledom where single people are often made to feel faulty, but at the same time our culture encourages the idea that there's an unfathomable gulf between the genders which must be negotiated with a combination of deception, passive-aggression and consumerism. Every happy ever after is just another small victory in the life-long war against the awful people we are inexplicably compelled to love. Watch some adverts, which are fiction in miniature - count how many couples you see presented who seem happy together.

In real life, sometimes people fall in love in a magical way. They feel the same way about each other, they seek to outdo one another in making each other happy and as a result, their love does live happily ever after. This doesn't mean that nothing exciting or interesting ever happens to them, that they never have any problems, but true love does happen. It's not fair that not everyone experiences it, but that doesn't make it less real.

Human beings tend to rate tragedy as the highest form of art, and being at least 63% human, I understand where that comes from. But there's a tendency in literature, especially the kind that wants to be taken seriously (and to some extent, the kind that is taken seriously), to take a horribly cynical approach to romantic love - not just all true love is doomed, but all romantic love is dysfunctional and destructive  In recent years, there even a trend of scientist characters explaining that science shows that love is all a meaningless bio-chemical illusion, even though the book will still be every bit as preoccupied with sex and romance as a TV soap.

In the The Lover episode of last year's BBC series Faulks on Fiction, Sebastian Faulks talked about the evolution of the romantic novel from Jane Austen to what he described as more realistic views of love like The Golden Notebook and The End of the Affair where everyone is miserable and doomed to hurt one another. You can watch it on Youtube. If you are have a romantic bone in your body, you may throw things. The rest of the series was pretty good, though occasionally funny in its pretentiousness and there's shockingly few women around.

9. In real life, no two love affairs are the same. 


This is especially, though not exclusively, a problem for those who are cynical about romantic love. 

Raymond Chandler is the only writer I can think of whose hero (Philip Marlowe) fell repeated in love with only very slight variations of the same woman and it didn't matter. Chandler is all style and that's okay - more than okay, it's delicious. But those women weren't complete characters. Or they were, but just the same troubled kind-of-sleazy kind-of-classy blonde who was sometimes a brunette, but usually a blonde - "the kind of blonde to make a bishop kick a hole in a stained-glass window," no less. Was she ever a redhead? I can't remember.

In real life, I've known people who have "types", but these tend to consist of very lose criteria. I don't know anyone who has repeatedly dated the same kind of person.  Sometimes they have things in common; I've had friends who always seem to be going out with people who do the same kind of work, or tall people, or musicians. I have a one friend who is always dating model train enthusiasts! But these relationships are completely different, different dynamics, different significance and intensity and everything. I know from personal experience that one kind of romantic love can be so completely different from another that it doesn't feel right to use the same words about it.

Yet I've read authors where all protagonists fall for the same kind of person, to the same depths, every time. Where one relationship ends to be replaced by an exactly duplicate relationship. Different couples within a story operate in exactly the same way.  I don't even believe these "types" are necessarily the author's own, just a type they feel comfortable writing about.

Real life should never be that much more interesting than fiction.

10. Beware cultural resources on sexualities which are not your own. 

People are, of course, quite capable of writing about sexualities which are not their own, just as we can write about people of different genders, ages and so on. But if we need to talk to friends about attraction, observe the world around them and write from our gut. What kind of thing would this character find attractive? In a sense, anything is a valid answer - sexual attraction is diverse enough to include anything you can dream up - but you need to believe in it. Otherwise other people certainly won't. 

When straight and gay people get it wrong, it usually holds to a horrendous stereotype. Ian Fleming, bless him, did this constantly in the Bond books. He successfully created a character that almost everyone wants to be (James Bond), but not so many people want to have sex with (no they don't - people want to have sex with a young Sean Connery, not the character James Bond.). So Fleming comes up with all manner of odd pseudo-Freudian psychologies which drive all kinds of women and girls into those Rolex-adorned arms. His female characters are generally very weak, but their sexualities are even weaker and some of them are extremely problematic.

Straight women aren't a whole lot better when it comes to writing about gynophilia. I'm sympathetic; straight women are at particular disadvantage with understanding why people love them, because they're given so many consumerist messages on the subject. Straight men may get the impression that nobody could possibly them hot, but there's nothing they can do about it and hopefully, sooner or later someone does anyway. Every time a women turn on the television or leafs through a magazine, we are instructed on new and sometimes contradictory ways to be sexually attractive.

So occasionally you read a sex scene written by a straight woman who has absorbed these messages on what it is that men look for in a woman:

She had driven him crazy with desire by being the perfect combination of available but not too available. A man won't buy the cow when he can get the milk for free, but after months of her Thatcherite stance on free milk, he was finally prepared to hand over his magic beans. She slowly removed her lacey thong, in this season's primrose yellow, £5.99 from M & S. Her freshly-waxed hoo-hah had the scent of apple blossom, whilst the rest of her body smelt variously of vanilla, cocoa butter and cucumber, which the ancient people of the Cotswolds regard as an aphrodisiac. His heart skipped a beat at the absence of any trace of unsightly hairs or stubble, blemishes, flab, tan-lines, laughter-lines, pantie-lines, split-ends, open pores, cellulite or wrinkles. She was a perfect size 6, with the bottom of J-Lo and the perfectly formed breasts of whoever's breasts happen to be popular at the moment...

As I say, sexuality being so diverse, there must be someone, somewhere, who is attracted to women in that way. But you'd be better using your imagination - being an equal opportunities lech, who has had many conversations about attraction with various folk over the years, I'm pretty sure that, whatever butters your muffin is basically the same kind of thing applied to slightly different social and physical markers.

The clue is in the fact that our love songs are almost entirely interchangeable. The heteronormative world being what it is, when Roberta Flack sang The First Time Ever I Saw Your Face, we might have assumed it was about a man. When Johnny Cash sang it, we might have assumed it was about a woman. It means the same thing, whatever.

..........
So what did I miss out?

Here's a link to 10 Things Fiction Writers Should Remember (1-5)

10 Things Fiction Writers Need To Remember About Sexuality (1-5)

1. Sexuality is not about what people do when they are naked.

It isn't even what people do.

There are often horrified objections against any hint of homosexuality in children's literature (such as King and King) or even comic books (see the recent article on Batman's sexuality and for once, do read the comments). Writers for adults seem only slightly less reluctant to include queer characters in prominent roles. The idea seems to be that if you mention queerness, in any context, it has to be accompanied by a colour-illustrated guide to all possible sexual acts.

Heterosexuality, meanwhile, is everywhere. Even the most sanitized fairytales - the sort where the Gingerbread Man survives at the end (honestly, my nephew has a copy) - feature heterosexual couples, romance and romantic potential. In broader fiction, heterosexuality is frequently segued into places where it is neither necessary nor realistic, as code for everything from this is a happy ending to this character is a "real man". Straight characters don't have to actually have relationships in order to demonstrate their heterosexuality; they just have to notice people they find attractive, flirt a little, refer to their romantic past.

Queer characters can be handled just the same, without reference to tribadism or even double groom wedding cake toppers. Equally...

2. Queer people can be the center of stories which aren't all about sexuality.

Okay, so we've not entirely arrived at the stage where the presence of a woman protagonist doesn't make some people classify a book as Chick Lit. It's only in the last ten years that movies with black male protagonists which aren't all about racism have become entirely unremarkable. There are very few books or films with a queer protagonist which aren't mostly about their sexuality - even when they are about real life queer heroes like Alan Turing or Oscar Wilde. The only exceptions I can think of in mainstream literature are early twentieth-century classics which feature bisexual protagonists, and a small handful of films.

There's nothing wrong with books about sexuality; nothing at all.  We need these stories too. But I think writers often resist the use of queer protagonists because they don't want to write a consciousness-raising novel that winds up in the LGBT section of the book shop. I'm just saying, you don't have to.

This is especially the case with science fiction and fantasy, where it is possible (if you chose) to create worlds in which homosexual relationships are completely unremarkable, so sexuality is genuinely never an issue. This is perfectly possible, but very rarely done. Foz Meadows wrote a great post on Default Narrative Sexism and the same applies for homophobia; if you can make up all the rules and it still sucks to be queer, make sure you're doing it for a good reason.

3. Queer people don't exist to help straight people along.

It's absolutely fine to have queer people who are secondary characters; best friends, family members, colleagues or whatever. Secondary queer characters can be wonderful; Carlo is by far the best thing in the generally quite wonderful Captain Correlli's Mandolin (things do go dramatically downhill once he's out of the action, thus the generally). In Harlan Coben's Tell No One, the lesbian sister-in-law is an important ally (played by the lovely Kristen Scott-Thomas in the film, which is great - maybe even better than the book!). But these characters have to be complete people, with their own stories, with their own self-interest, even if their main role in the story is to help the protagonist (or indeed the villain).

Think about black guys who, for a long time, played the buddy or sidekick to the white muscle-bound hero in American action movies. These guys were often quite funny, more laid-back, less emotionally repressed, prepared to show fear or love for their friend when the going got tough. They were also expendable - they often got mortally wounded just before the final confrontation with the bad guy, in order to give the white hero reason to finally get in touch with his emotions and massacre several dozen henchman.

Then there was the Lethal Weapon franchise. Danny Glover's sidekick character is complete. He is a more rounded, complex, realistic character than Mel Gibson's grumpy hunky Lethal Weapon of the title. He has a family, he has plans for the future, his life and his relationships develop over time. He does not exist to help the white guy. He exists to do his own job, to be a father, to fulfill his own ambitions and just happens to be an excellent ally to his white hero chum.

There's no shortage of Gay Best Friend characters in fiction, especially romantic comedy movies and sitcoms, but few of them (that I can think of, though this isn't my genre) have their own complex home lives, work lives and dreams which have nothing to do with their straight bestie. There's a lot romantic comedy could learn from Lethal Weapon - more rounded buddies and more explosions!

This is something Sparky has written about a lot, finding himself cast in the complicated role of The Gay Uncle.

4. There are probable and improbable consequences of sexual activity. 

When Four Weddings and A Funeral came out, I was thirteen and remember hearing a doctor on Radio 1 listing the various sexually transmitted diseases that Andie McDowell's character, Carrie, would most likely have contracted, and how many times, over the course of her 33 love affairs. The doctor had a point and the chances are that a real life Carrie would have faced the occasional course of antibiotics. However, in terms of story-telling, this was information we didn't know or expect to know.

But whilst fiction is full of unlikely events, there are several unlikely sexual things which happen in fiction all the time. I know I'm a pedant but I do get cross when 

• A modern, educated, sober man and woman are overcome with lust and decide to perform the baby-making act without condoms, when they're not really into each other and the last thing either of them wants is to become a parent. It happens in real life, but it is rare - even when people are overcome with lust, most people can think of other ways to get one another off (see the colour-illustrated guide that comes with every mention of queerness). Failing that, very many women have access the Morning After Pill.  When none of these steps are taken, there must be a reason.

• However dire a situation is, nobody has an abortion. Some women do prefer to carry a desperately unwanted pregnancy to term rather than have a termination - that does happen - but there are always deep-seated reasons. In fiction, unhappily pregnant women dismiss the option with as little as "Well, my grandmother was vaguely Catholic." or "I don't like doctors." 

• Conception occurs during the first and last sexual encounter that a couple has. In real life, it takes the fertile heterosexual couple an average of about a year to conceive, having vaginal sex a few times every week. In fiction it happens all the time. Not saying it shouldn't happen (I've known real life cases where it has), but when it does happen, folk tend to be staggered by the incredible odds.

• Contraception is used but fails and conception happens anyway. Accidents do happen, no contraception is 100% reliable, but the odds for failure are very low and fantastically low when we're talking about a single sexual encounter as opposed to a long-term relationship. 

All the same, don't take risks kids. Other unusual but not exactly rare things happen in real life that never happen in books - like women getting unexpectedly pregnant without the use of IVF in their late fourties and early fifties. Why does that never happen in books?  .

5. Romance is not necessary for a complete character, a complete story or a happy ending

You know how it is. You get to the end of the book or the movie and two random characters who haven't shown the least bit of sexual or romantic chemistry fall into one another's arms (frequently, one of these characters is the only woman in the story). This is sometimes forgivable, sometimes annoying and sometimes deeply uncomfortable.

Usually, it fails because the whole romance hinges on the idea that any straight man and woman could get together, and the writer hasn't really thought about why these two people might find one another attractive before deciding they should get together. Sometimes it fails in a particularly unpleasant fashion because the writer has assumed that any kind of conflict between a man and woman will pass as a Beatrice/ Benedict antagonism-cum-flirtation, when in fact the writer has written two people who could never like one another on any level.

Rarely, but most frustratingly, it fails because the writers have created a character who is an aromantic asexual. One of the things that bugs me the most among the very many things that bug me about sexuality in The Big Bang Theory is the writers' insistence that Sheldon Cooper should have a girlfriend-boyfriend relationship with the highly-sexed bisexual Amy Farrah-Fowler (or as I like to call her, Blossom). He isn't in love with her and he has no interest in physical contact, let alone sex. Amy, on the other hand, is sexually aroused by a group hug. If it made any sense that they were together in the first place, it would be a truly tragic pairing. As it is, it looks like an attempt by the writers to create yet another heterosexual couple in perpetual inevitable conflict, at the cost of the two best characters in the whole show. Grrr!



A little note: I'm not in love with the word queer but I mean everyone who isn't straight and even QUILTBAG doesn't quite cover it (I saw an even longer acronym recently, but it was decidedly unmemorable).