Flexible lot, we humans. Or at least, so we like to think.

The social model of disability notes that it isn’t physical/mental/psychological/etc. impairments that seriously disable a person. What causes disability is the failure of our communities to adapt to those impairments, to make allowances for them, to fit us in.

There are a few respects in which the social model doesn’t quite work for me – there are no adaptations that anybody could make that would make me able to work full-time outside the home with this level of fatigue, for instance. But there is a lot of truth to it, and a very important point to be made.

The assumption of our society, in which being “abled” gives one significant privilege over those who are not, is that people with disabilities are an aberration, a break from the norm. The adaptations and allowances needed to include those with disabilities are easily seen as a drain on energies and resources, as, frankly, just that little bit too much to ask. Not as the moral right of “normal” people. The perception is that the disabled are a small minority. Add to that the insistence within our culture that there is no middle ground between a grumpy, resentful, “bad” disabled person and a self-sacrificing, “brave” saint who never complains, and you have a deeply fucked-up situation.

It would be fucked-up even if we really were a small minority. However, we’re really not. I’m not going to go into facts and figures now because it is late, and I’d rather quote no figures than the wrong ones. But I think it is fair to say that between physical impairments, mental illness, psychological disorders and learning difficulties, most of us will at some point in our lives suffer from some kind of disability. In fact, the only way to avoid it is to die very suddenly, at a sufficiently young age that none of physical or mental effects of advanced years have yet started to appear. As a thirty-one year old with a walking stick I may be unusual; as an eighty-one year old I would be unremarkable, or even unexpectedly hale. There is a reason why a lot of disability activists use terms such as “Temporarily Able-Bodied” (or “TABs”) to describe people without disabilities. I find those terms somewhat problematic unless I can be certain that the user is counting mental illness, learning disabilities and so forth under bodily impairments, but they still carry an important lesson.

So, what of all of this? Well, a couple of things. Firstly, if you campaign now for better wheelchair/scooter access in your town you may well feel the benefits of that when you are elderly, though I hope that’s obvious. Likewise large-print and audio books in your local library, depression support groups and other facilities, ideally free at the point of delivery.

But primarily what I’m getting at here is that our attitudes as a society towards adapting to the particular needs of individuals within it are in need of a complete overhaul, and a vast injection of flexibility and compassion. Nor do I just mean on an official level, though of course that is an enormous part of it. I mean within social networks, groups of friends, relationships.

Take my friend A, who is a lifelong vegetarian and has coeliac disease. She also loves good food and company, and there is in fact plenty of lovely stuff she can eat, it just isn’t always what people are used to cooking. She is fortunate to have many friends (including myself when I’m well enough to cook, which sadly isn’t very often) who regard catering for those with unusual dietary requirements as an enjoyable challenge, and an invitation to creativity, not as a burden. But the very fact that this is worth remarking on is, frankly, deeply depressing.

Take me. I (obviously) can’t attend late-night social events in the middle of London, especially on a busy night. I sometimes have to cancel my attendance at events at short notice because of an M.E. flare-up. My anxiety disorder is such that conflict can incapacitate me for days, and even the most constructive of criticisms have to be worded carefully to avoid triggering a panic attack. Friends of mine have to allow for these things because I simply cannot function if they do not.

Take my lovely boyfriend. Along with depression and a couple of other things, he has a very serious phobia of smoking and all things smoking-related. He also has PTSD due to an incident at a popular local pub a year or so ago: he now can’t go there, and gets stressed when the place is even mentioned, even though he knows and likes the people who run it. To have a good social life, he needs friends to allow for these things – to not hold all social events at that particular pub, to avoid smoking or preparing to smoke in his vicinity, and so forth.

As many within our society currently view it, all three of us are making unreasonable demands on our friends. I would regard that as an offensively ableist view, obviously. But also a broken one for other reasons.

Let’s add on all the other friends I have with special dietary requirements, physical and/or psychological disabilities – a few of those, with some overlap. And then add those who, say, have particular topics of conversation which are just upsetting for them, or who can’t stay late because they need to get home to the children or the dog. Add LGBT people who may feel unwelcome in certain environments and want to socialise where they know they will be safe. Add those who need their friends to allow for when they are working late or they need to visit their elderly relatives. Add those who are not necessarily disabled, but who are not neurotypical and thus benefit greatly from being communicated with in a certain style that might not be familiar to the communicator. And those are just my friends, a small-ish, young-ish group, ranging from 20-odd to 40-something, for the most part. I am certain there are large numbers of other sorts of allowances friends may need to make for each other, in the short to long-term, both that I’ve forgotten and that I’ve not thought of.

Getting somewhere, am I? Now calculate, if you will, your chances of getting through this life and never having to ask your friends to make allowances for you and your needs.

And the thing is – that shouldn’t be an awful thought. Making life easier for our friends and helping them find our friendships and the world around them more accessible should not be a rare or remarkable thing. It can be complicated, especially when there are lots of adaptations to make at once, but if we’re all working on together then it’s just another challenging and enjoyable and ordinary part of life. We are not a world full of people with no problems, no difficulties, no disabilities. We are a diverse and wonderful people, us humans, and we’ve come so far partly because we’re good at being flexible and we’re good at being strange and because we’re good at looking after each other. So, yeah. Let creativity and compassion reign in our friendships, and in our lives generally. Go that extra mile, and stock that vegan spread and those herbal teas that you don’t drink but your friend does, and check out the wheelchair access and creche facilities at your party venues. And then let’s spread it out wider and try to change our cultural attitudes towards people who need help, and accessibility, and allowances to be made. Because all of these things are normal, and this is what life is supposed to be about. 🙂


After all that ranty idealism, this is not to say that I don’t feel horribly guilty when my friends (and partners) have to make these sorts of allowances for me. Of course I do. I have low self-esteem and of course I’ve internalised all of society’s myths about how heroic and non-complaining and no-trouble-to-anyone I should be. But I do think I should try to feel less so, and encourage others to do the same. Gratitude and reciprocity are much more sensible and much more fun. 🙂


Apologies, lovely readers, that I’ve not been on here for an awfully long time. I shall attempt to update more often. 🙂

I’m afraid I’m breaking my silence with something fairly frivolous, though I think it says an awful lot of horrible things about our culture’s attitude towards women.

I’ve just worn outside for the first time a new coat – an end line from Nomads, bought from a seller on eBay. It’s a rather gorgeous, long velvet patchwork job with a hood. Open from the waist down, which is possibly going to be sub-optimal when I have period pains, but on the other hand it enables it to be nice and non-restrictive in its length, and it’s big enough to wrap around my legs when I sit down. Being made by Nomads it is also fair trade, which is a big plus.

So far, so good. It’s also pretty warm where it closes despite not being as thick or heavy as I expected, and the lack of weight given my disabilities is a real advantage. I got the large size despite being rather thin, which was sensible as it now fits over four layers. It’s almost too long which may cause problems in the wheelchair, but I’ll cross that bridge when I come to it. 😉

HOWEVER, it has no pockets. Not one. Not even a pair of those rather inadequate, shallow, oddly-angled and non-fastenable pockets that most long women’s coats have and which appear to have been designed by one of Dickens’ pick-pockets for ease of access.

But no, instead, there are no pockets at all.

Now, correct me if I am wrong, but I cannot very well imagine a man’s coat, similarly designed as a warm and smart garment for winters in town, lacking such an essential thing as pockets. I don’t think it would even occur to a designer to omit them.

Are women who wear women’s clothing expected to have no keys? No train or bus tickets? No parking permits or spare change? No gloves? And this even by ethical and talented designers such as those employed by Nomads? The open nature of the coat below the waist *does* mean that I could carry such things in my trouser pockets… except that the leathers I’m wearing today at least also have no pockets, which again I have never seen in a man’s leather trousers. I usually wear a rucksack, but sometimes it is just nice to be able to access my Oyster card or similar quickly, and rucksacks are better for items one does not need to get to in a hurry.

*sighs* I suppose I must conclude that I am expected to conform to the demands of designers and carry a handbag. Despite the fact that those things hurt my shoulders, are difficult to carry alongside a proper rucksack, and are a nightmare to keep secure in areas such as central London. And they are much harder to negotiate when you carry a walking stick, as I frequently do.

Where this particular outfit is concerned, I’ll think of something. And I love my coat sufficiently in other respects that I shall put up with this rather startling flaw. But I shall also be writing to Nomads, because this is just *silly*.

There are so many more important and urgent things for us to be campaigning about that I’m reluctant to start beating the drum too loudly for the need for women’s clothing to have good, secure pockets, designed (as men’s are) to fit with the appearance of the garment. Even so, this does seem like yet another example of the fact that products designed for women are aimed more at the people who are going to be looking at the woman, rather than for *her*.

And I for one am getting thoroughly fed up with it.

A good friend of mine made a lovely post today on her blog, partly inspired by the “Beautiful Imperfect” post. I’m very honoured! And she gave me permission to quote from it, as I am just about to do…

However, one part of it knocked me sideways slightly. She talks of her resistance to “loving her body” in the sense in which she feels she’s always been told to:

The sensual, almost autoerotic, physical self-love that some people radiate is alien and unsettling to me; I’ve never felt that way and can’t imagine wanting to; telling me to ‘love my body’ in that sense feels like another way of telling me to grow up.

It had, I admit, never even occured to me that my Beautiful Imperfect post could be taken in that sense of “loving my body”. But of course, I’ve come across that ideal of self-love before. I also experience it – my friend is somewhat asexual, and I am not. And I have been known to thoroughly enjoy the physical self-love, the wearing of good clothes and attracting admiring glances from my loved ones and friends. Feeling “sexy”, feeling “gorgeous”, all of that.

I don’t think it counts as loving my body. Not really. It’s part of *liking* it, perhaps, for some of us, including me. But part of my realisation – part of the “Beautiful Imperfect” concept, as I see it – is that what a body looks like, and its sexual side, are pretty much the least important parts of what it is and what makes it beautiful and wonderful and useful. What matters is what a body can DO. And this my friend captures perfectly, looking back to her childhood:

I ran around in it with a sense of careless ownership – MY arms, MY legs, MY tummy, MY sensations. I didn’t feel pretty, not because I felt ugly but because I was just busy being alive and didn’t think about it. I might have paused occasionally to admire the way my nose turned up, my freckles or the way my hair looked underwater, but for the most part my body and my face were just there to do things with. I looked in mirrors to pull faces or to play with symmetry. I twisted around trying to see what my back looked like or to lick my elbow. I felt at home in my body…

Isn’t that great? And don’t we all remember that time, before the narrow demands of conformity and self-consciousness got in the way? *That* is the kind of loving my body I want. That is what my friend also describes her yearning for:

…[T]o ‘love my body’ in the sense of being at home, careless monarch of my five-and-a-half feet of the world – letting my arm touch the side of my breast without feeling revulsion at something not my own – loving the feeling of my muscles working – revelling in physical sensations, rather than shrinking from them because they force me to feel my size and shape – I want that often to the point of tears and can sometimes achieve it.

That’s what I mean when I say I want to love my body. I think that’s what the bloggers on FWD mean as well.

But isn’t it interesting that it clearly isn’t what a lot of people think when they hear the phrase “love your body”? Because this friend of mine isn’t someone who’s unusually affected by the popular media, by conventions of what femininity is meant to be. Far from it, actually.

But think of all of those adverts that use “love your body” in precisely the painful, shallow way that makes my friend so uncomfortable. “Love the skin you’re in”, “you’re worth it”, all of that. Love your body, and show you love it by spending hours making it looks like we say it should. Love your body, and show you do by starving it, by wearing shoes that make you uncomfortable and make it hard to run away. Love your body, and buy what we’re trying to sell you.

It’s “love” used as a toy in the selling of self-hatred. And that sucks. Because love is a powerful, wonderful, beautiful thing, and those bastards don’t deserve to take the word from us.

I want to reclaim it. I want the phrase “love your body” to mean not just “you look great the way you are” but also “who cares what you look like? Your body is awesome, and made for so many interesting things!” I don’t mind fancying myself, it’s quite fun. But loving myself is just so much more, and so much harder, and so much more important.

Love your bodies, dear readers. Love them in the way my friend did, the way I did, the way I suspect you did too, when we were all children, and before the silly media circus got its claws into us. Let’s all be easy and comfy and adventurous in them, whatever they look like, and whatever our disabilities or lack thereof. These are our homes, our shelters, our companions.

And aren’t they fucking amazing? 🙂

Beautiful Imperfect

One of my favourite posts on one of my favourite blogs is this one. Some of the regular writers on FWD/Feminists With Disabilities discuss why they love their bodies. It’s an inspiring, happy, wonderful post.

When I read it six weeks ago, it provoked something of a crisis in me. Possibly I would not have set up this blog without it. Certainly I would not be writing this post.

Because you see, I realised that didn’t love my body. Not at all. Occasionally I liked how it looks, I welcomed the desire that my husband and boyfriend feel for it, occasionally I had a grudging acceptance of it. But primarily I resented it, even hated it.

I still don’t love it. Not yet. Nor can I get close to truly accepting it as “me”. But I have been thinking about that post and my attitude towards my body ever since, and I am making progress.

Where does this hatred of the body come from? This is an area where feminism and disability politics meet, and it matters.

As a woman living in a highly sexualised patriarchy, my culture tells me that the primary role of my body is to be attractive to men. For heterosexual (and bisexual) men to feel lust for it, and for gay men to find it inoffensive and aesthetically pleasing. Without those qualities, my opinion matters less, my value is negligible; I am invisible. With those qualities, I am still not listened to – just looked at. My gaze and my desires are irrelevant. If I fail to fancy a man who fancies me, I am a bitch who doesn’t know a nice guy when I see one. If I fancy a man who doesn’t fancy me, I am either ludicrous or threatening. You think I’m being too harsh? Look at the way that plain women are treated in tv comedy, even that with a generally liberal approach.

Of course, I’m being unfair. Very few men (or women) that I know believe in all that rubbish. But then, that’s largely because I pick my friends (and my partners!) quite carefully. (And walk away rapidly from anyone I’ve identified as an evopsych!) The messages that reinforce those belittling attitudes to women are present in the media every day. And I’ve internalised them. Of course I have. Very few of us haven’t.

That is bad enough. But in the popular media it’s not just about who is attractive to, say, the majority of men looking at her. That would be bad enough. But this is about something yet more ugly: it’s about beauty as an arbitrary but impossible ideal that women are nevertheless expected to try to conform to. Even Hollywood stars who spend worrying numbers of hours each day trying to fit into that very narrow box are photoshopped mercilessly by magazine editors before their image is regarded as acceptable. A woman can never be too thin, too clear-skinned, too young-looking, too pale, too passive, too bland. We are not supposed to display character, power, personality, wisdom, pain in our looks – the trappings of life, of life well-lived. If we do, that’s “ugly”, and heaven help us then.

(For more on this particular issue, I recommend Shakesville’s “Impossibly Beautiful” series, of which this is the latest post.)

I grew up bullied partly for my boyish appearance, regarded throughout my childhood and teenage years as having at best a “nice” face, and mocked cruelly for my lack of any prominent bumpiness in the chest area. Without that ideal of perfection hovering around me, perhaps I would not have suffered from this too much. As it was, it took me a long, long time to look at my big feet, my knobbly knees, my titchy nose, my miniscule upper lip and above all my flat chest with anything other than despair. Emerging as somewhat gender-queer and discovering a love of dragging up helped a lot with the last of those, but the rest still bothered me a great deal.

And that’s before you get to my disabilities. I have the condition known sometimes as Chronic Fatigue Syndrome, and sometimes as Myalgic Encephalymyelitis, and sometimes as Myalgic Encephalopathy, and sometimes as Chronic Fatigue and Immune Deficiency Syndrome. I have an anxiety disorder, which doesn’t show much in the appearance of my body in a photograph, but shows in my movements: in the tension I carry at all times, in the fidgeting, in the ease with which I am reduced to tears. I have an Inflammatory Bowel Disorder, of which the least said the better. I have Cervical Degenerative Disc Disease, which sounds worse than it is, but still means that I have a slight, variable scoliosis, a huge amount of back pain, and occasional twitching, tingling or numb fingers.

Oh, and I have depression, but only mildly, and it’s more a result of the other things than anything else. 😉

Those are mostly invisible conditions. Usually the first sign anyone meeting me will have of my disabilities will be all external: my walking stick, my wheelchair or possibly my taking several pills at 11pm. All things that make my life better rather than the disabilities themselves, in fact.

But the internal effects of breaking the laws of perfection are still internalised, just like the imperfections of the appearance of my body. As a disabled person, I am never going to be perfect in body or mind and this something I realise I have been struggling with for most of my adult life.

But here’s the other thing: as a disabled woman with two loving partners, strong desires, some talents and a mind of my own, I am a walking (or more often, recumbent…) subversion of what beauty should be.

And what I am finally learning, at the ripe old age of thirty-one, is that that ABSOLUTELY FUCKING ROCKS.

NO ONE has a “perfect” body. And thank goodness for that! Perfection is blandness, is conformity, is boring. Do we expect our friends, our partners to be perfect in order to love them? Of course not. What is glorious is endeavour, is kindness, is love, is wisdom, is experience. Is excellence. Is joy. Is generosity. Is spending our time and resources – whoever we are – on more interesting things than trying to look like a faked image in a magazine that is disrespectful to the very people we are supposed to be trying to emulate.

I am loath to talk too much about the “good points” about being disabled. One can get glib. One can end up talking like Cousin Helen from “What Katy Did”, and *boy* is that problematic.

But the fact that I cannot possibly have a perfect body is suddenly beginning to strike me as somewhat liberating. I don’t have to put up with that shit because I know it won’t work for me anyway.

And the pain, the fatigue, the mucky, yucky reality of four chronic conditions and a bonus fifth? They’re horrible. But they’re not the fault of my body or my brain. And they are part of who I am now. I would willingly get rid of all of my disabilities tomorrow if I could. But I don’t think now that I would choose to lose the effects they have had over the years on my character, on my face.

Plus sometimes the nerve-related stuff from the M.E. and the CDDD cause my left thumb to move on its own accord for minutes at a time. And that’s just funny. 😉

We are all imperfect, dear readers. All of us. The magazines lie to us. We are all imperfect, and that’s what we’re meant to be. 🙂

Fun, isn’t it? :-))

Welcome to Carterhaugh! This is a post that I’ve already put elsewhere, slightly edited for this blog.

I read a rather interesting Observer column by the lovely David Mitchell yesterday, on the restrictions he feels that comedians are currently facing in Britain. He worries that edgy comedy is getting driven out by the demands of good taste, and that this is Not Good. He references the joke that he told (though someone else wrote it) on “The Unbelievable Truth” about Anne Frank being given a drum kit. This apparently provoked a lot of complaints. I heard the joke myself, and personally I found it moderately funny and was not offended by it at all. Mind you, I have privilege here: I have no Jewish ancestry, and lost no family members or ancestors in the Holocaust.

I mostly agree with his column, I think. Though saying “I’m sorry people were offended” by the Anne Frank joke is rather weak. As an apology it’s meaningless since he clearly doesn’t think he behaved badly in making the joke, so it would probably have been better if he’d said “I am sad that people were offended”, which is a) presumably true and b) more honest. That’s a side issue, though.

The trouble is that his column was a little vague about where (if anywhere) there should be real boundaries as to what’s acceptable. I don’t mean in terms of censorship, which I am generally (if tentatively) against, but I mean in terms of what’s seen as socially acceptable. And there was certainly no indication in the (mostly very annoying) comments to the column that any of the people responding were seeing this as more than a binary opposition matter. Either all edgy jokes are good – or even the only good jokes – so long as some people find them funny (and anyone who is offended is being silly or precious), or none of them are acceptable and comedians should risk no attempt at gallows humour or ridiculing anybody.

And, well. I thoroughly disagree with both those points of view. As I imagine most do – probably including Mitchell if he were not currently feeling scared and angry. And the implications of conjuring that binary opposition are quite disturbing to me: they roll together those opposed to anything risky or radical or rude with those who oppose the kyriarchy and pointless hurtfulness, and would rather that comedians who claim to be adventurous aren’t just reinforcing a status quo that privileges some groups above others, and lays the powerless and vulnerable open to ridicule. Put simply, if you’re mocking someone less powerful than you are, U R Doing It Wrong. 😉

It’s partly about who gets to tell what jokes and when. One thing I like about Mitchell is that he’s often the first person on a panel show to remind his fellow contestants that he and they are all privileged people (fairly to ludicrously well-paid, usually white, usually male, usually able-bodied, etc.). It is right and perfectly acceptable to me that I get to make jokes about my disabilities, and my partners and closest friends get to join in – but if other people called me weedy, crazy, weak, etc., I’d be hurt and quite disgusted. That’s the same principle of reclaiming jokes and words, of why Reginald D. Hunter gets to make race-related jokes when he’s on panel shows and his white colleagues shouldn’t.

It’s also about the social context, I think. The reason why I personally don’t find the Anne Frank joke offensive is that with a very few horrendous exceptions, I can think of nobody in the UK who genuinely thinks it is funny that a young girl and her family were murdered, along with millions of others of Jews, gays, lesbians, gypsies, pacifists, socialists, communists and people with disabilities. I can think of horrendous people who don’t think it *happened* and there are rather more of them, and it’s awful. But I don’t think that Mitchell’s joke was giving comfort to them, since it worked very much under the assumption that the Holocaust did take place. It was a nice piece of whimsy in a dark place, and I think that’s rather a good thing.

In any case my point is that misogyny, other manifestations of anti-Semitism, other forms of racism (especially against asylum seekers), Islamophobia, homophobia, biphobia, transphobia, ableism, sizeism, agism and a dislike and mistrust of the working class, hatred of benefit claimants – and more generally of anybody poor – these are all still very much current and popular. We are not living in a post-patriarchal, let alone a post-kyriarchal era, and ridiculing people who are already despised by far too many is not just disgusting, it’s *lazy*. It’s offensive without being edgy.

This is why I really wish Frankie Boyle would turn his considerable wit and vicious humour and extraordinarily fine timing and delivery and turn it on the rich and powerful for what they do (you know, like satire’s meant to?), rather than default to “rampant misogyny” mode so much, especially against vulnerable women, both in and out of the public eye. This is why I love The Thick of It despite its incredible rudeness, but get deeply uncomfortable and furious when Have I Got News For You takes time out to disparage benefit claimants or Mock the Week starts kicking in to trans people.

I’m aware that I may be coming across here as a humourless member of the PC-brigade. Well, that’s fair enough. I do try to be what is unpleasantly named “politically correct”, and I’m not even slightly ashamed of that. If that makes people think I’m humourless then they’re welcome to. But actually, I think I’ve got rather a good sense of humour, that I can be funny in my own right, and that I’m not afraid of challenging subjects. I just think there are vast numbers of good targets for edgy, risky, potentially offensive humour, that don’t involve privileged comedians poking fun at those who are less privileged, and in some cases actively oppressed.

Other things on this sort of subject that I really want to post about on here at some point: funny being a feminist issue[1]; how to be insulting while avoiding oppressive language.

[1] If you haven’t come across this myth that women can’t be funny, especially in any way that doesn’t involve talking about men or shoes, you’re fortunate, is all I can say. The same goes for eccentric. Ridiculous, I know, but there do seem to still be an awful lot of people who think these things, and I suspect that some of them are script-writers and tv producers. Being aware of that prejudice is something I’ve found very claustrophobic at various times of my life.