Choosing the beautiful door

This isn’t exactly about Dove’s latest beauty campaign (I’m not their target demographic, by a long shot) but it is about choices.

The campaign was, basically, about women choosing to walk through one of two doors, one marked “Beautiful” and one marked “Average”. My mind immediately went to three things; Firstly, to the idea of being literally forces to assess your own attractiveness before going into work just because of your gender, which I thought was a fairly neat metaphor for women in the workplace anyway. Secondly, to the idea of self-determination of attractiveness, something tht disabled people are assumed not to do, and thirdly the idea of choice in how you percieve yourself.

I’m not an attractive person, society tells me this all the time. It tells me this every time someone’s blind-date in a sitcom turns out to have a mental illness or to be in a wheelchair. It tells me this every time the crippled main character turns away sadly from someone who they were romantically interested in, who has just brought home their Royal Marine boyfriend instead. It tells me this every time there’s a programme like The Undateables, or a survey listing how many people would consider dating someone with a disability (Apparently 70% of the UK wouldn’t, according to a poll in the Obsy in 2008. Sobering statistics.) and that’s before we get to the really creepy assumptions that’re made about disabled people’s relationships.

People assume some strange things – The classic one is that the first thing a physically disabled person is looking for in a partner is “kindness” or “understanding” or “gentleness”. Let me be the first to shatter that bubble – I am as fond of vigorous buggery, and as prone to picking my partners largely on a combination of shared interests and physical attraction as the next person.

The other, thankfully less common nowadays, assumption is that mentally ill people are hyper-sexual, and that we will throw ouselves at anyone that smiles at us and indulge in a spot of instinctive frotteurism before even introducing ourselves. Possibly whilst dribbling.

But, effectively, society is telling me that I’m more of an ugly, sexless, infantile mole-rat than average.

If I was a small, cute woman, there’d be the added edge of “She’s so cute and small and helpless but still so cute and attractive!” which leads towards fetishism, Devotees (note capitalisation), abasiophilia and, kegadoru. I know enough disabled women, especially in the EDS community, who spend their online days fending off huge numbers of men asking to see their braces.

Increasingly, much in the manner of the German craze for renommierschmiss, if I was a well-muscled sapper with a limb lost to an IED and a dark tan from three tours in the Gulf, I’d also have some representation of myself as attractive and worthy (See Bryan Adams’ portraits of disabled soldiers, some of which just ooze eroticism, intentional or not).

On one hand, this is fantastic – more disabled people being able to see themselves as beautiful. On the other – Sometimes it’s beautiful because or in spite of their disability, rather than just beautiful and, unrelatedly, disabled.

For example – My partner is ethnically Serbian. He’s not beautiful because he’s Serbian, or beautiful despite being Serbian, he’s just beautiful, and incidentally (when filling out forms that require me to spell his surname) I remember that he’s Serbian. It’s not “I don’t see him as Serbian!” it’s just not something that comes up very often, and pretty much only in relation to practicalities (like spelling his name on forms). I’d sort of like disability to be treated more like that, as unlikely as I know that is, when considering someone’s attractiveness; This is Ben, he’s a stand-up comedian, he really likes short women and maple syrup. Fancy him? Awesome, how about a meal out? Incidentally, can the restaurant be on the ground floor, since he’s going to bring a wheelchair.

I know it’ll never happen.

But anyway, back to the doors. Do you know what usually happens when a disabled person calls themself beautiful? Publicly and in a forum where people can comment, I mean, not just in the privacy of their own head? Even if by “calling themself beautiful” I mean something closer to “Posts a photograph of themself, even if the focus is the landmark behind them rather than their own appearance” They run the risk of being attacked. There’s the chance that their photo or video will be taken and turned into a meme – I’ve seen a couple of “Haha, white people dancing!” memes attached to a video of developmentally disabled teens at a disco. I’ve seen any number of disabled people’s faces being used to convey “hurp a durp” or “LOLwhut”, and of course the classic of any wheelchair user standing up by their chair being labelled with “FAKE” or “LOL IT’S A MIRACLE”.

We like to feel good about our appearance, and for enough of us, especially the chronically ill, our “self image” doesn’t include the disability – We want to be seen standing, or with our stoma bags tucked away, or with gloves covering the worst of the peeling skin. For the first few months when I walked with a cane, whenever I needed a photograph taken I would tuck it up under my arm, or do my best Andrew Eldritch impression, just to save myself the indignity of being seen leaning on it. I know plenty of disabled people are very open and honest about their orthotics, but it’s not something that we’re all comfortable with.

Can you imagine how hard it is to feel attractive, when literally everyone like you in the media is a punchline? Fat women have plus-size pinups, even if they are counterculture, there’s plenty of Mr and Ms Gay events – We know what attractive LGBT people look like, and the same applies for BAME people. They’re all pretty broad categories. But there’s no movement that shows attractive people who just happen to be disabled, other than the externally-imposed fetishisation of either katawa shoujo and its ilk, or the incredibly-conditional “You can be attractive and disabled if you picked up your disability by doing something heroic”.

If I walk through the beautiful door, I risk being a punchline. If I walk through the “average” door, that’s an obvious lie – I would kill to be average, average doesn’t have blisters on its skin from old physio tape and bruises and threadveins from manipulating its joints back into place. I am given a choice – I can pretend that this lanky malfunction that I live in is normal, or I can pretend that it’s sublime.

That brings me back to the second point, actually – that disabled people are assumed not to have Thoughts about how attractive they are, in themselves. In most media, when an ablebodied character tells a disabled character that they’re beautiful, it’s supposed to be a shock and a revelation for the disabled one, because they’ve never really considered how they look before. Fun fact number two – We worry about how we look, just as much as everyone else. Some of us do think we’re attractive, some think we’re hideous. Some of us like things about or bodies that you’d not expect (I love having see-through skin, being able to trace every vein across my chest, having turquoise-blue highlights in anything that I wear just by rolling up my sleeves) and some of us would list Appearance Problem Number One as being something not disability-related (If I could have a less severe hairline, I would).

I don’t know. Maybe my point is that self-determining your own attractiveness is more dangerous and/or difficult and/or groundbreaking for some people than for others, or maybe my point is just that I’ve had a lot of morphine and ginger beer today.

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More Cripplesex.

One of the things in life that has really changed, since the serious onset of hypermobility symptoms, is sex. Sex is now an investment in a way that pre-symptomatic me could never have understood. The second that anything looks like foreplay, I have to start calcualting in my head; Quickie? Marathon? Creative? Energetic? Lazy? Do I have the energy for one of the above, but not the others? What are my contingency plans if I start then can’t finish, and will that be fair on my partner? How likely is it that I’ll break down? If I do, will it be a vague “Ow, that hurts. Right, half-time, continue in a bit” or will it be a screaming failure that ends in accident and emergency? If I have sex now, will I be able to do anything else for the rest of the day, and do I need to?

Atop that, there is the issue of morphine. First there’s “Have I taken enough that this will be fun rather than possibly painful?” then there’s “Should I have the sex now, whilst it’s being offered, or should I take my morphine and then wait, knowing that the opportunity may pass before I’m optimally sorted?” and then there’s the awful “Have I taken so much morphine that I can’t perform?” and the sneakily worse “Oh, apparently I’ve taken so much morphine that I can’t finish”.

And that’s even without going back over the awful meme of “If you’re on opiates, you can’t consent”, which I have raged about before.

Imagine that every time you want sex, even if the situation and timing is otherwise sensible, you have to think seriously about whether or not to let your partner know, because there’s an even chance that you’ll end up doing something that’s at best disappointing or at worst damaging. Imagine that every time your partner wanted to initiate sex, they knew that there was an even chance of you being hurt in the process, or of you just being in so much pain that you couldn’t even imagine having sex.

As you can probably guess, this will put a lot of strain on basically anyone’s ability to have sex regularly, or in a variety of ways, or with any kind of spontaneity. Both partners will end up cautious, effectively. When you know that there’s that one position that makes it easy, even if it’s nobody’s favourite, there’s a good chance that you’ll fall back on it more often than you’d like to. If a friendly hand-job is less of a practical risk than a gamahuche on a flying trapeze, you’ll always go straight for the former, even if the latter is more your cup of tea. The frequency of initiation will reduce, on both sides, as both sides get disheartened by hearing “No”, and as both sides mentally reduce the possibilities for sex (No more sex in the shower, it has to be on the bed because that’s more comfortable. No more sex in the mornings, because the anti-inflammatories have worn off by then. No more sex standing up, it’s bad for the knees. No more quickies, because the drugs make it difficult to be punctual…)

It’s difficult, and it’s difficult to negotiate this, even with a long-term partner; Saying “It’s my choice to risk an injury” is all very well and good, but in something that’s as participatory as sex, it’s not quite fair – When the injured partner is suddenly recoiling away and reaching for the anaesthetic, it’s naturally going to upset the partner that feels at least partially responsible for the injury. It’s not a physical injury, but it’s not conducive to the atmosphere.

And it’s something that it’s impossible to talk about, with even the best of doctors. Doctors don’t want to hear “Well, my sex life is kind of irregular and boring now” because they’ll say “Oh, just make sure it’s really, really gentle and always in the spoons position (which is actually really bad for your hips and back, by the way!) and that you always take plenty of time for foreplay and stop the second you’re in pain.” and in the process completely miss the point; If I wanted sex that was scheduled in for 9.30 until 11am on a Saturday, in one of the Two Approved Positions and of Designated Intensity, I could probably manage that. I’m not saying it’s not a good start, it probably is, but it’s dissatisfying and it adds to the feeling that life, as a disabled person, is always going to be regimented and planned in advance.

And, of course, if you then miss your Saturday sex-appointment, or if you hurt yourself during it, you’re going to have to wait another week. And then a week becomes a month, a month becomes a year, and suddenly you’re the self-fulfilling prophecy of the Celibate Cripple.

It probably all comes back down to talking to your partner and making compromises. Always having a standby, a sex toy that can finish for you, a position that’s less hard work, an agreement that it’s fine to carry on alone, or even just to sometimes be happy with completely non-escalating sex (as in, touching and teasing and doing sex-related stuff, but with no intention of really aiming for an orgasm, or of committing to anything that takes a set amount of time), so that if nobody finishes it’s not a “failure” because there wasn’t an aim. On the other end of the sccale, as much as it’s not ideal, get used to aiming for ambitious, failing miserably, then doing something less acrobatic. Investigate new positions, even ones that seem ridiculous. Get used to pausing to rearrange pillows, or to balancing on unlikely items of furniture because they look comfortable and are a good height. Talk, even if it’s just a quick check that things aren’t just comfortable, they’re actively fun. Don’t let people fob you off with the idea that the best a disabled person can get is sex that’s not painful. Bragging aside, I’ve had absolutely fucking transcendent sex, even with neoprene supports on every limb and a break for morphine in the middle.

I’m not going to say “Do these Five Hot Things for Awesome Cripplesex”, but here’s A Couple Of General Principles That Might Help;

– Talk about sex when you’re not feeling like having sex, so that new ideas aren’t all lost in a lustful scramble of getting to the point. Talk about sex after sex – What was good, what was bad, what could have been better, what suddenly seems like a great idea for next time. Be honest about what you can and can’t do when you’re in different physical states, and what you prefer, and find out your partners’ preferences too – Would they rather not start at all, rather than curtail halfway through? Is a hand-job when you can’t have penetrative sex better than nothing, or is it lemonade for whiskey? Is a mutual gamahuche more or less tiring than sex, or is it more complicated than that? Are they willing to lend a hand (or mouth) when you can’t reciprocate, and are they comfortable with recieving when you’re not interested in getting one back? And probably a million other questions that will spring to mind.

– Have sex when you’re feeling experimental, as well as when you’re really lusting for it. Not much takes the pressure to perform off better than knowing that it was an even throw between going to the corner shop to get breakfast, or having sex. Try out the slightly ridiculous things that you think will either work amazingly or fail disastrously. Try out new kinks that won’t stress the same joints, or at least might not stress them in the same way. Investigate toys for yourself and your partner, and see if they’re a less-energetic kind of fun. Try out different locations (Furniture, walls, suspension) and different positions (Don’t be shy about propping things with cushions), since it’s surprising what can turn out to be the “best” positions for unstable joints.

– Try not to count the “failures”. Nobody having an orgasm isn’t a failure, it just happens sometimes. Getting injured isn’t a failure, and unless it’s consistenty when doing the same thing, it’s usually best to dismiss it as just a fluke accident. If it’s always when you’re in the same position or trying the same thing, though, it might be worth taking that out of rotation until you’ve worked out exactly what it is that’s causing the problem. Giving up halfway through, when you’re desperate to carry on but physically can’t, isn’t a failure, it’s just one of those regrettable things that happen (and is also a good reason to have a “carry on without me” clause if your relationship works like that).

– Explain, and ask questions; Reassure your partner that they’re unlikely to hurt you, and that you will tell them immediately if anything has gone really wrong. Explain that there are things which will briefly hurt, but where it’s safe to carry on. Ask them if there’s any things which they’d feel better doing for safety’s sake, beyond what you’ve already suggested.

– Find sex-related things which aren’t penetrative sex, or which aren’t even sex at all, and do them. Watch porn? Read smut? Take nude photos? Go shopping for sex toys? Talk about your fantasies? Do it together.

– Find non-sex-related things, and do them in the time when you’d be having sex. Anything where you just get a chance to be interacting with, probably including touching, your partner. In private, and in a way that you don’t generally do with other people. Even if it’s just holding hands in bed and talking utter nonsense, or brushing each other’s hair, or sitting on each other’s laps whilst playing chess. I don’t know what you do, but keep doing that until you get the energy to have sex again.

Sex when crippled is weird, and it’s not going to get any less weird unless we talk about it. And unless we talk about it, people are going to keep assuming that we don’t have it, and that’s just wrong.

And I’m going to keep rambling about it, at least.

Ew, cripple sex.

Sorry. Just thought I’d get that thought out there before anyone else thinks it.

Right, yes.

I have a notoriously high sex drive. I love it. I have described it in the past as “That hobby that I can do when I’m too short on brains to do anything more complicated.” but it’s also a nice way of interacting with other people for the sake of interacting with them, or for having lots of nice physical feelings, or for feeling closer to the other person, or just to be nice to someone, or to find out a new sex-thing, or for all sorts of reasons.

And I am very, very aware of the importance of consent. Several years ago, the original shoelace-tier waited until I’d taken my evening medication, and raped me. That was a mess. Before that, an ex used to wait until I was so stressed and angry that I dissassociated, and then have sex with… Well, the other thing. I can barely remember. He stopped, when the other thing left him in a bloodied heap. Another used to semi wake me up in the morning, or at night, then pressure me into sex before I was fully awake.

And on a more personal level – I really hate the thought of having sex with someone who isn’t incredibly enthusiastic about sex at that time – Whether it be because they really want sex with someone now, or because they really want sex with me personally now, or because they want to try out a new thing, or give me a bit of a present, or try out a thing they’ve just heard of and thought I’d be good at, or whatever. I physically shrivel at the thought of hurting someone, or having someone be too polite or frightened to say “Actually, no, I’m really not interested”, or of continuing during sex with someone who has mentally checked out, but is acting the part so as not to offend me.

For the record, I know that sex with me isn’t always the easiest thing in the world.

I have Ehlers-Danlos Hypermobility. I can’t always support my own weight, or coordinate my movement. My joints dislocate easily, and at least my hips and shoulders, and usually my wrists, do as well during sex. Every time. Yes, I can put my feet behind my head. Yes, I can get my hands to places that you’d never normally expect to manage. But honestly, being alive and in this body all the time hurts, to the point that ninety eight percent of the time I’d rather just have a quiet wank in the company of nice people, and leave it at that.

I keep seeing a repeated meme in consent culture; “You can’t consent if you’re intoxicated. If you’re too high to sign a contract, you’re too high for sex”, and to a certain extent I agree that, if you’re beyond a certain degree of intoxication, you can’t consent. If you’re completely blackout-drunk, you can’t consent. There’s a big uncertain zone in the middle where you might really consent at the time, but where a sober-you wouldn’t consent. And then there’s where I exist, all the time.

I take morphine. A constant, low-level trickle from 20mg of slow-release a day, with more on top of that in the form of Oramorph – 10-30mg at a time. To be pain-free enough to even contemplate sex, I generally have to have taken about 20mg of Oramorph within the last half hour. At that point in time, I wouldn’t be able to sign a contract, drive a car, remember my seven times table or play chess. But it’s the only time I have in which to have really satisfying sex, that doesn’t hurt, that I enjoy, and that is practically possible.

Current thinking on consent means that, in order to toe the party line, I have to be celibate.

I don’t agree. I enjoy sex. I enjoy sex with other people, more than masturbation, and I want to be able to keep having it, even though I am usually “too intoxicated” by the “can you sign a contract?” metric. I have had a lot of sex whilst intoxicated which has been some of the most joyous of my life. I have experimented with new kinks and new partners. I don’t want all of that to be immediately grabbed by people with no idea of nuance who will scream “You’re in denial!” at me.

How’s it done? Talking. Endless talking. Discussion with anyone that I’m likely to have sex with which talks about what we both do and don’t like, and what consent and non-consent physically looks like whilst under the influence. Plans in advance of when it is all right and not all right to initiate sex. Discussions of the notable non-correlation of my physical response and my actual consent (Morphine can make you a little bit impotent, and conversely can give you inappropriate hard-ons at a slight breeze. I can be very up for it, but not quite up for it, if you see what I mean. Lots of lube and care needed). Slowly introducing any new sensation or position, and checking during the act whether we’re both fine with it. Gradually becoming more ambitious and fluid with repetition and familiarity and lots of non-verbal communication.

Not less morphine. Many, many years of painkiller avoidance has taught me that less morphine isn’t the answer.

So why does it annoy me so much, rather than just being another basically-good idea that gets lost in the nuance-free shouting of most internet discourse? “Nothing whilst intoxicated” is a good rule of thumb, isn’t it? Unless you’re really good at very honest communication, to a level of honesty that most people are scared by, just avoid the drugged sex and you’ll be fine. No big hardship.

But no. It’s not fine, because it’s just another thing which suggests that disabled people don’t have sex. It ignores that a fair number of us need drugs which affect our moods and judgement (Whether directly or indirectly) just to get through the day. We don’t need to feel lik, by having sex whilst continuing to take our medications, we’re doing something irresponsible or off-message. Our partners don’t need to feel like they’re probably raping us every time we have sex. If nothing else, it takes away our ability to define for ourselves that some interactions are consensual, and some are rape. The second person that I confided in, about having been non-violently raped whilst high on my own painkillers (Taken according to the packet instructions, thank you Tramadol), insisted to me that there was no difference between that and consensual sex with my partner. Repeatedly. Told me over and over that if I wanted to call ST a rapist and a bitch, I had to say the same thing about my partner. Until I was actually crying, and they were making sure that they’d won the argument with “I know it’s upsetting, but you have to accept that you’re being raped all the time!”

GPs, physios, and therapists over the years have been variously horrified, incredulous and disgusted that I was having sex at all. I’ve had one burst into giggles at my frustration at a medication which briefly destroyed my libido. I’ve had one actually say “Oh, but of course [loss of sexual function] won’t matter to you because…” and only stop when I gave her a stare that nearly made her combust. I’ve mostly just encountered dismissal and disbelief that my sex life could be a part of my life that I valued.

And this is because, in the public opinion, disabled people aren’t sexual creatures. We go to bed early, and drink cocoa, and have strange, beige appliances all over our houses, and wear ugly clothes, and socialise at carefully-shepherded daytime events. You’ve never known futility until you’ve tried to get a wheelchair taxi at 3am when you’re drunk. Our friends are angels and our partners are diligent carers, nun-like in their habits and acting as our chaste companions.

But yes, effectively – Until we get around the idea that someone can be on a lot of prescription medications that alter their mood or inhibition, but still be willing and able to consent to sex, we’re adding to the idea that disabled people aren’t sexual. And that adds to the infantilisation and othering of disabled people, and the isolation of their partners, and the dismissal of their relationships as somehow “not quite normal”. And that’s really, really damaging.

If you’ll exuse me, I’ll be in my bunk.

Stupidity interlude.

So, I was debating whether to include this or not, since it’s not disability related, but yesterday I got literally the best A+E care I have ever recieved in my life.

And it was over stupidity. Or rather, it was over using a product *exactly* as the manufacturer intended, and then my own weird biology causing problems.

The problem was, as you might have guessed, a kegel ball.

I love kegel exercisors. I find them extremely soothing and stress-relieving, as well as occassionally arousing and generally good practise for sets of muscles that don’t get much use otherwise. I have several sets of them – A silver plastic “jiggle” pair that I never use, due to them being so badly constructed (Really, a woven cord on an insertable toy? Breeding ground for infections. Use once, then relegate to being a cat toy), a weighted silicone and ABS pair which looked too much like a dead mouse for me to use, and this pair – Two glass eggs in a silicone harness, sold with the instruction that they could also be used without the harness. And, in fact, kegel exercisors where all you get is two spheres/eggs, and nothing more are pretty common. So trying them out for the first time without a harness wasn’t exactly a silly idea. And using them without the harness was, I found, a lot more comfortable and pleasant than using them with a harness. I could move around without worrying about the semi-rigid connector between them pushing them into the wrong place, or the external strap catching my external bits.  And basically, I could suck on them like they were boiled sweeties. This was good.

So, time passed and I decided to remove them. One quick “Thloop” and I’d got the first one pushed out. Waited half a minute, then tried the same trick with the second one. No luck. Reached up to look for it – Can’t find it , even with a fingertip. Try squatting, pushing, jumping, stretching, jogging up and down the stairs and phoning friends in desperation to get it out.

No luck.

Further investigation eventually finds it, stuck up around a corner and three-quarters buried inside a muscle that won’t let it out. Attempts at getting it out with two fingers just results in two dislocated fingers and a dislocated wrist.

Partner gets home, by which point I have taken enough diazepam to turn an elephant in musth into a purring kitten, and with pelnty of lube and reassurance, he tries to get it as well. He manages to make it spin in place, but not to go anywhere. We have a bit of a giggle whilst doing this for the length of two episodes of Frasier (Including him picking me up and shaking me like an errant piggy-bank) and then finally give up. It’s now midnight, and I’m off to accident and emergency at St J’s, because I know they’ve got a really good gynaecology department if everything goees tits up.

I get settled in, (Everyone is remarkably nice to me and not mocking at all, desoite the fact that I feel like the adult version of the schoolboy that’s stuck a marble up his nose and now has to get help to get it back out) and by about 1am, I meet Dr Daisy (Not her real name, but since I’ve not met her before and probably won’t again, she’s not getting included in the usual initial-only naming scheme, since that’d confuse the issue). By this point I am in a LOT of pain. Cramp is starting to set in, and my hips are variously dislocating and spasming, along with everything else. I take a few more shots of morphine, and am offered a diazepam. And then, once it’s set in, over to the room with a proper door we go. Plastic speculum, warm bowl of lube.

And Dr Daisy doesn’t even bat an eyelid when I say “Can I do this myself?”

She just happily sits and directs, telling me when she can see the ball, telling me if I need to go left or right, or push in further, or rotate the speculum to get the blade underneath the ball, or angle it slightly differently, or open it further. Every few minutes, I get her to hold the speculum still, to allow me to relax my hands and fix them. After about half an hour or so, I feel a click. She tells me to try releasing the pressure on the speculum – It doesn’t close; It’s gripped the ball! Slowly, slowly, out it comes. She looks about as delighted as I feel. Freedom!

And that, my dears, is how you conduct a medical procedure. You trust the patient, you help them to solve the issue on their own, and you don’t dive in speculum-first and demanding things. This was a lot quicker, a lot easier, and a lot less traumatic than it could have been. And I got my ball back.

A horrible set of assumptions

There’s a refrain that I keep hearing;

“Oh, that’s really good of them”

That’s referring to my partner, or sometimes to my friends. And it’s for spending time with me.

Not just talking about the times that they’ve taken me to hospital, or the times that they’ve made me food or reassembled me or looked after me whilst I was morphined unto oblivion for my own good, but talking about spending time with me at all. Going to the pub with me, or the cinema, or having tea at each other’s houses.

It’s almost as if some people don’t know how to parse the interaction between an obvious cripple and a non-disabled person, or a less-obvious cripple, other than assuming that the one who isn’t held together with elastic bands is a carer of some kind. Whether paid or unpaid, people assume that the primary feeling or responsibility that someone is going to have towards a disabled person is caring.

Now, this isn’t to say that I don’t care about my friends, or that they don’t care about me. We do, indeed, all care about each other. But it’s not “caring” in the “has a carer” sense. My best friend doesn’t wash my hair like some kind of Florence Nightingale figure, endlessly lavishing care onto a castrated lump that’s only capable of responding with gratitude. He washes my hair because we’re friends, and friends help each other out. And then I go through to the workroom and critique his latest projects, because that’s a way that I can help him. And then he tells me the potted history of the fly button, or something like that. Then I build a push-mould to make historically accurate fly-buttons for his trousers. We help each other out, and it just happens that, much like he needs a sculptor to make protos for him to electrotype, I need someone to wash my hair and cut my toenails.

I feel like I should write this as a quick list.

Things that being friends with a disabled person will get you;

– Friendship

– Cheap seats at the opera

– A new appreciation for hot water bottles

Things that being friends with a disabled person won’t get you;

– Good karma

– Inspiration to live your own life to the full

– Brownie points

– A fucking medal

The thing is, the people who say “OIh, you must be a really good friend!” to my friends, just for being with me – I can only assume that they don’t have any disabled friends. Or that they can’t imagine being friends with a disabled person. Or that they don’t think that disabled people could be an equal partner in any kind of relationship. Or that they think that disabled people can’t have the kind of qualities that could make someone want to be their friend. I’m pretty sure that my best friend sees my disability as being a bit like my being extremely tall, or my having a pet greyhound; It’s not why he’s my friend, but he’s not my friend despite it either. It’s just one of many slightly unusual and sometimes slightly inconvenient facts about me that subtly colour our interactions – Not the quality of them, just the practicalities of them.

This all gets worse when it’s addressed to my partner. We’ve been together since I was about nineteen, and in that time I’ve gone from incredibly fit and outdoorsy to basically housebound. So people say that it really shows his character, for staying with me (Subtext; “When he’s a good looking bloke with a steady job and a nice house, who could just as easily be with someone non-crippled”).

The thing is, this does worry me. I *know* that it’d be easier for him, on a purely practical level, to be with someone who isn’t crippled. To come home from work and not have to cook for both of us, and look after the dog, and massage the cramp out of my ruined hips and shoulders. It’d be “fairer” on him, as an NHS nurse once helpfully reminded me “If I could be a proper partner and go out with him to the pictures or something, since it wasn’t fair on him being stuck in the house all the time”. It’d be easier for him to relate to other people our age, when their partners were talking about jobs and children and marriage and holidays, to not be worrying about inpatient care and making the house wheelchair accessible and trying to arrange respite for us both.

But then I talk to him, and I realise that to him it’s just normal. He’s not interested in a hypothetical perfectly-fit-partner. He’d no more avoid being with my for my disability than he’d avoid someone else for being obsessed wtih model trains or for having three cats – It’s just part of the deal of being with me.

Anyway, more philosophical in the morning. Right now I’m tired and high.

Lexiconnexion

I’m currently reading Lady Chatterley’s Lover for the second time, and am about halfway through. And it’s brought to my attention a few of the awkward things about sex and intimacy and disability that, frankly, nobody wants to talk about.

 

In it, as you probably all know, Constance (Lady Chatterley) is married to Clifford Chatterley (The lord of Wragby), who was crippled during the war and becomes a wheelchair user. Constance goes on to have a long, complicated sexual relationship with Oliver Mellors, the gamekeeper, and eventually leaves not only Clifford, but the whole country.

 

Firstly – Lady Chatterley doesn’t have an affair (Well, she does, but it’s not with the gamekeeper, Mellors, it’s with the “Dublin street-rat” Michaelis). Instead, Clifford tells her to go and produce an heir to save the family name, with some man of her choosing. The speech around that, talking about her teenage affair in Germany, and thinking about the whole act and point of sex, gets across that it was not Clifford’s injury that made him disinterested in sex, he was just always disinterested in it; He was devoted to the “mental life” even when he was a strapping, healthy, soldier.

 

This is fairly important, since so many books would have left it as “Oh, he’s a cripple, so of course he doesn’t want sex” – And because of this, I think that it’s actually really important that Mellors is also described as being “rather frail really” and as being thin and pale, and walking with a slight limp. Certainly, both to modern and contemporary eyes, he would be considered to be obviously ill – Not the cartoonishly handsome, mysterious older man that most people would expect. He’s not Mr Darcy, he’s not startlingly more physically impressive than Clifford (In fact, the text goes to great pains to note Clifford’s powerful shoulders, clear blue eyes and strong hands, whereas Mellors is described as being cold and pale and fragile, breathing hard when he walked, and generally as being awkward). Tommy Dukes even chiddes Clifford for being so uninterested in sex, since elthough his cock doesn’t work, his mind certainly does.

 

It’s all really quite positive stuff – Lawrence gets across that even though the body might be imperfect, or sore, or awkward, the mind can still have that spark of desire in it, and that it still deserves to be fulfilled. And through the first third of the book, Constance and Clifford are intimate, in the way that they are – Talking about stories, having long conversations, generally doing the thing of two people living under one roof in close proximity.

 

But the text continues, and suddenly it notes a darker phenomenon: Mrs Bolton, the shoelace-tier.

 

I don’t know what the word for it in the real world is, but around here what she is is called a shoelace-tier. Shoelace-tying is the act of ingratiating yourself into the confidences of someone who’s ill (Whether that be physically or mentally) and forcing them to accept a role. it might be as simple as making them the patient, or the child, or the pet, but it can be complicated and many-layered; I’ve encountered someone before who liked to posit his injured friends as wounded heroes, and make them depend upon him almost as if he was their servant; They would have someone whom they could tell their old stories to, about “back when they were whole”, and he would slowly take over every aspect of their modern life, until the only confidante, practical helper, lover, or friend they had was him. I can see why he’d do it; It probably feels quite secure to feel that someone needs you so thoroughly that they can’t ever risk losing you, but it’s damaging. The person being preyed upon started to feel like the only person “good” enough put up with them was him, they felt indebted to him for all of the help that he so willingly gave – even though others would probably have given it too if they’ known it was neded – and they began to depend upon him for more and more as time went on, more because it was psychologically simple and familiar than becuase it was physically necessary.

 

And that’s what Mrs Bolton is to Clifford; She slowly isolates him from Connie, who is drawing away from him anyway, giving him the illusion that she cares for him more deeply than Connie does, and eventually “He let her shave him or sponge all over his body, as if he were a child”.

 

Those lines at the end of that chapter made every hair that I have stand on end. I actually had to close the book and go for a sit down with my friends and a small glass of brandy. That kind of abuse, that sort of sickly-sweet, soft, insidious abuse, is so common amongst the disabled and otherwise vulnerable.

 

At the other end of the scale, in the book, is again Mellors, who lives alone and keeps himself to himself. I sometimes wonder if Connie’s speculation on why he is so deliberately spiky and isolated is a coded way of suggesting that the same happened to him once?

 

Anyway, I’ll probably keep digging and commenting on this – It’s a good bit of light reading about the class war, and thus is currently my favourite bedtime story.