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.

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 Role. There'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 Dancing, Bubba 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.

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

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). 

How much empathy do we need anyway?

When I was at school, we had to do a history coursework project entitled Empathy. We had to write three essays on What should happen at the Treaty of Versailles from the point of view of a British Tommy, a German politician and a French washerwoman (it should have been - I think it was a French General, but I can't remember exactly) in 1919. Most of us objected to what amounted to a creative writing exercise for history coursework, but hey, it was a creative writing exercise so I loved it.

My Tommy was a open-hearted poetry-reading Cockney who, despite the lurid flashbacks he experienced mid-sentence, saw that the Germans were a broken people and shouldn't be treated too Hackney Marsh. The Frenchman insisted that there was greater danger in creating a future German aggressor through massive sanctions and huge reparations, and after all, what was the point of Alsace and Loraine apart from dogs (German Shepherd Dogs after all) and quiche? The German politician was a Marxist and felt that if the war had proven anything, there no point in nations anyway. 

This wasn't what you were supposed to do. The naive point of the exercise was to imagine how particular individuals felt about the aftermath of the First World War (blissfully ignorant of the word First in its title) in order to understand why the Treaty of Versailles and its consequences were inevitable; the British were angry, the French were afraid and the Germans were a proud nation in shock. But not all British felt the same, not all of France felt the same and Germany was in a state of revolution, so there were certainly some diverse views in that quarter. Some people argued at the time that the Treaty was setting up plot lines for the sequel, twenty years later. The Treaty of Versailles happened because certain individuals - lots of them, mind - had particular points of view. And those points of view makes sense too. I don't think there's anything in history that you can't even begin to understand, even if you're reasonably sure (and occasionally certain) you could never have made those choices yourself. You don't need to get into anyone's head. In fact, when you look at any big group of people, you have to acknowledge that there are many different things going on in many different heads. 

I was thinking of this because of an interesting post by Emma, The Denial Barrier and Its Effects on Activism. Emma writes about the problems with getting people to think about disability inequality:

Becoming seriously sick (like developing cancer) or being maimed (loosing the use of limb(s), organ(s) or whole sections of ones body) is not a pleasant thought for most people. For many it mentally equates with being given a death sentence. As a result people's minds minimise the likelihood of it happening to them. The same seems to happen with other illnesses and serious accidents that could lead to disablement. People just don't want to think about it. Not because they are callous or uncaring, but because, in many way they are wired that way. It's the force that tells people disability is sad, just too depressing to think about.

Over the years, lots of Disability Awareness raising has been based on a principle that the problem of disablism would end if only everyone could imagine what it was like to be disabled. So there are awareness campaigns where folk describe what their day is like in detail, all the problems they encounter, all the symptoms they experiences, so that folk will finally understand. And there are the awareness exercises where folk put on blindfolds or sit down in a wheelchair for an hour or two, so they know exactly what it would be like to be blind or a wheelchair-user. Philippa wrote about this kind of thing recently in the context of a campaign asking people to pretend to be poor for a week.

Emma makes a very true point. Most people's lives will be touched by disability (although most people will never personally identify as disabled) and yet folk often talk about disability as if it is an extraordinary experience, confined to cute but poorly children or strapping but injured war heroes on the telly. Meanwhile, people frequently misinterpret information about life's inevitable risk-taking and health to mean that people who get sick brought it on themselves, as opposed to watch out - you might get sick too!

However, is this kind of denial a central barrier to getting people to oppose disability discrimination?

Well, I am white. Unless I emigrate, I will never be a member of an ethnic minority. There are common experiences of racism which don't come close to anything I ever have or will experience. I know it must hurt, because I am human. But it's so long since anti-racism was based on compassion for people of colour, that nobody asks me to imagine how it must feel. Occasionally, I see an American movie which makes this demand, before soothing me with some ebony and ivory, don't worry whitey ending and that makes me very uncomfortable. I object to racism because it is wrong; it is illogical and it is very dangerous. I don't object to racism because I have sat down and imagined what it would be like not to be white.

Disability politics does still involve demands on our compassion. There's still a huge element of playing on the heart-strings at the same time as demanding fundamental human rights and this frequently misfires. People read a newspaper account of what it is like to have the Dreaded Lurgy and think, "Poor thing! If that was me, I would be miserable!"  People sit for an hour in a wheelchair and think, "If I was a wheelchair user, my life would be terrible! Poor people!"

And there's another big problem with this emphasis on empathy, that Emma touches on when she talks about the mechanism of denial in feminism:

I regularly read blog posts from feminists telling of their shock when they were abused by someone close to them and that being a feminist didn't serve as a shield/radar. Many of these stories all have an uncomfortable touch of "I behaved in 'x' manner so I thought it wouldn't happen to me". These people were familiar with the statistics and the forms abuse can take but on some level didn't think it was ever going to happen to them. I'm not going to list all the ways denial makes getting the message out about gendered abuse, harassment, assault and horrid acts like Female Genital Mutilation difficult.

Even when people have direct experience of disability, abuse or any other form of oppression or discrimination, that's still no Get Out Of Fail Free card. Many disabled people express prejudice towards other disabled people. Many women who have experienced abuse or rape will hone in on a single mistake they imagine they made, or play down what happened or even make excuses for their abusers. It's not about abuse, but only today, there's an article on the BBC News website about the lack of women in top jobs entitled Are women their own worst enemy when it comes to the race to to the top? jam-packed with accounts from successful women talking about how useless women are at pursuing high-status careers. (For a much better read on the same subject, see The pseudo-science and pseudo-feminism of Women Don't Ask)

This is all still about comforting ourselves. In the past couple of years, when I've talked to folk about the cuts to disability benefits and social care, many people, including disabled people, have stated that the cuts are justified. Not for people like me, of course, or people like themselves, or people like the other disabled people in their lives - oh no, we deserve more than what we get! However, there simply must be droves of fakers and scroungers out there who need a kick up the proverbial. They simply must exist. The world isn't so unfair as to allow the government to cut benefits where 99.5% of claimants are legit.

Shiney, shiney, shiney boot of leather.

So part of the problem is definitely a Just World Hypothesis, but neither its root nor its solution lies in personal empathy. Given that the Earth is trodden by such a massive variety of shoes, some of which don't make a pair, we can't ask everyone to walk in everyone else's. It's not necessary, but neither would it be sufficient. Every pair of shoes and every lone shoe feel different. Some people don't wear shoes. Walking in a pair of size 7 cherry red patent leather twenty-eight hole Doc Martens, as I do, only gives me some limited insight into what it is like to walk in other pairs of stylish boots. It tells me little of Crocs or Jimmy Choos. But I do know that other human beings wear Crocs and Jimmy Choos and so I respect them and acknowledge that their rights are the same as my own.