Naked selfies!! And online security as a feminist issue.

An audio version of this post is available here.

When you mention naked selfies, a lot of women (I haven’t canvassed men) aren’t comfortable with the idea and would prefer to do the whole “being naked” thing in person. Because when you send a naked selfie you have to accept that it may be leaked. It may be leaked deliberately by someone you ended up not having sex with. It may be leaked deliberately by your ex. it may be leaked deliberately by your ex’s new partner. It may be leaked deliberately by your ex’s current partner. It may be leaked by whoever finds your partner’s phone when they lose it. More recently, we’ve added to that list of potential disasters, and the new addition is horrible. Men might hack the cloud and steal your pictures, which seems unlikely unless your last movie grossed a few hundred mil, but we all know what 4chan is for, right? Right.

Even in the event that photograph of your lovely peachy bottom doesn’t appear on the side of a bus, there will almost certainly be sysadmins – the ones who maintain “the cloud’s” servers – cackling over it in a server room somewhere. You knew that. Of course you did.

The short version is: your vag or boobs may end up anywhere. The papers are full of it (yeah, you can take that both ways). They talk about the stars’ dismay and their distress after the event as a narrow issue, one that affects the person in question. They talk about privacy as a broad issue that affects everyone equally. Nobody seems to be talking about the fact that women are actually subject to a unique set of malicious sexual threats online and off, from the tiresome old offers of nose-rape on Twitter, to threats to hack, or actual hacks, of private sexual data.

The theft of (and subsequent propagation of) sexual images of a person is a crime of sexual violation.

The pictures stolen from various famous women recently were taken for the specific purpose – not of obtaining a naked picture of that woman – but of violating her. That’s what this type of crime is about. It isn’t a theft of property, where one may obtain items of value. It is a theft intended to unseat, to undermine that woman and by extension, all women.

The papers don’t talk explicitly about that, preferring metaphors that involve unlocked cars or banking data, as usual. But the lesson we learn from these horror stories – is a broader one than “don’t be a beautiful famous woman, because this may happen.” The lesson is: this could be you, so don’t risk it.

Naked selfies aren’t safe.

Well, I like naked selfies. I posted a little moan to twitter earlier today about the fact that the theft of famous naked selfies basically means that people – who will not stop taking naked selfies, let’s be realistic – are now just going to take disembodied shots of unidentifiable genitals. No faces. Nobody blowing you a kiss. No smiles. Just cock and cunt. While I like both very well indeed, and while that was always the smart thing to do with people you don’t completely trust – I think this being the only option is incredibly sad. This may seem a trivial complaint, but far from it.

These violations represent a tide-mark on human communications, the point at which trust of the internet – which had been hanging on by its fingernails – was simply erased from the list of possibilities with specific regard to women’s electronic communications. The only people sending recognisable naked selfies now are going to be the hopelessly ignorant and the entirely reckless (I’ll let you guess which camp I fall into). A recognisable naked selfie of a woman always implied a great deal of trust (NB: never ask a woman for this). And that’s an important thing, that’s a thing nobody is talking about. You can’t choose to trust someone now. Because the little hacker kiddies may get onto your server and if they find pictures of a naked woman that they either think is attractive or “gross”, they will propagate those pictures. The idea that women are having sex with people they can’t even trust with a photograph is one I find pretty … unsettling.

The option women had of building that trust with a potential sexual partner via the safe medium of photos has been deliberately taken away by the men of 4chan. And they know it. They’re thrilled about it. All this alarmism about naked selfies is just what they wanted. The downgrading of women’s sexual data from the highly intimate to the merely private is a major victory for them.

There’s another thing. Speaking entirely for myself here: I like naked selfies because actual naked human beings can be really triggering for me. While I probably don’t class myself as sexually mainstream, I certainly don’t imagine that I’m unique in this particular regard.

It’s not that I’m uniformly averse to naked humans. But if I don’t have a significant amount of trust with the occupant of that human body, the urge to hit them with an axe and then run is strong in this one. And that leads to really problematic sexual encounters. It’s a snowball effect where the more often you have to suppress the “axe and run” instinct the less emotionally present you can be during sex, the less you enjoy it, the less you want to bother, the less you bother, the stronger the axe reflex becomes. So I like to build up (and maintain) trust with a potential (or existing) partner by talking to them. This involves texts, emails, stupid photos of things I come across in my day. I WILL BOTHER YOU WITH BEETLES AND SHIZ. I expect to be bothered back. That little syn/ack syn “Are you there?/I’m here, are you there?” that computers handle so much more elegantly than humans. The vast majority of this isn’t sexual. Because trust isn’t really about sex. Sex is a side effect of trust (I don’t believe this applies to everyone, but this paragraph is about me). And yeah, at some point if it’s that kind of a relationship, it will involve sex and it will involve naked selfies. That’s important. It isn’t trivial. It is how I get from living in a bubble and wanting to hit anyone who touches my bubble with an axe, to letting someone put their hands on me. (Without secretly wanting to hit them with an axe.)

Because here’s the thing: naked selfies are safe.

Although photos have been used by bad people to violate, nobody ever got raped by a photo. They’re not a bad way to get to know someone.

They are a place where a woman has a terrific amount of agency. She can probably overcome difficulties or transgress socially imposed boundaries in a selfie that she’d have a hard time broaching in the flesh, and once broached electronically, they’re out there. You don’t have to have that awkward conversation about your weirdo nipple if he’s seen it and is still turned on. You don’t have to explain that you need to dress up as Pumbaa from the Lion King in order to get off, if someone’s seen it and got so excited they’ve already dashed out and bought a Scar onesie. A picture is often worth not a thousand words, but entire books. A picture is often the only route to liberation someone has, and this applies more to women than to men, because the weight of society’s disapproval rests more heavily on women’s sexuality than on men’s. Our sexuality is already imposed, reduced, warped, forbidden, truncated, restrained, punished: silenced.

Naked selfies are a door, ajar. A woman can choose how to represent herself. She can choose how much of herself to show. The timing is hers to choose (things happen far too quickly in real life for me: axe). The trust is hers to give – or to withhold, not as an absolute, but from minute to minute, hour to hour. She may stop. She may drive the exchange. She may say yes to this and no to that. She may make requests. She may bark orders. She may take time to think over ideas she could well have been railroaded into in the flesh. Identifying one’s own lack of consent – as a woman – often requires space to think. We are not given those tools, we have to claw them out of our bones, where society has buried them. This is the beginning of a safe negotiation that is often difficult or lacking in real life.

And when 4chan or anyone else hacks into a woman’s – specifically a woman’s – private account they damage the freedom all women feel to use that medium safely to explore their sexuality. They leave women once again with the option of going into meatspace with men they haven’t built any trust with, having probably not told him anything about her preferences or her sexuality or her hangups or her needs. It’s a truncation, another silencing, another punishment.

4chan knows this. That’s why they do it. This isn’t about the violation of any one person – those images as far as 4chan are concerned, are merely the flag hoisted over a very calculated undermining of the sexual agency and security of all women. If you doubt that a certain class of men are really that organised against women, I urge you to look into the events of #gamergate.

That security for this type of data needs to be far, far better is not simply an issue of data privacy in the way your bank account or first draft novel needs good security. This is an important feminist issue. As with online threats and the need for online anonymity, women have a specific set of vulnerabilities here, those who seek to exploit women’s online vulnerabilities have a specific incentive to obtain this data and that is the opportunity to sexually humiliate a woman for the approval of their male peers; and by doing so, undermine all women’s presence online. It is literally all win for these guys.

Firms holding our data need to demonstrate that they’re aware of this. It is time the electronic empires we all rely on woke up to the fact that women’s online security risks are different and require explicit identification and action: we have a specific enemy. He wants to drive us offline, or leave us online but feeling (and indeed being) vulnerable. This isn’t about property theft, it is about misogyny.

Women’s security needs are different, and they are not being met.

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Deep roots & bones, a love letter.

An audio version of this post is available here.

Hello, love.

Come with me. Come on. 

Once upon a time, in a country very, very close to here, there was an enormous party thrown by a Queen. Well. Some people organised it for her and the people of the country actually paid for it, but she was there, is the point. They had hundreds and hundreds of boats all decked out with little flags and golden crowns and stuff, and people waved flags and the Queen’s own boat, which was made of SOLID GOLD yet somehow floated, was so full of unicorns and lions that she couldn’t actually ride in it herself, and they had to give her quite a boring boat with hardly any gold on it and she was made to stand in the rain. While the unicorns and lions had a proper party.

And then later on – weeks later – there was another big party and almost the whole country came to it. At this party there was an epic story told: the story of that country and its history and achievements. Everybody celebrated like mad. There was a feeling of unity. Of belonging. Of identity and commonality. It’s a feeling that’s often absent. It kindled in these people. And since then the people in charge have tried to keep that little flame of unification burning by reminding the people of that country of their glorious wars, and of how rubbish everyone else from all the other lands are.

The story they told at that party was pretty edited to be honest, lots of things were left out, like this country transporting a million slaves and killing ten million Indians. Things like that.

In fact it wasn’t really the history of a land at all. It was the history of a movement upon the hide of a land, and the movement in question was capitalism and its foundation: industrialisation.

And before then the peasants lived short, muddy lives under the heels of their lords. So industrialisation was a definite step up and ultimately gave us iPads and washing machines and zero hours contracts, and people who can say ‘computer says no’ and send you home to starve.

In fact when you think about it, life hasn’t changed. The only thing that’s changed is that the mud is now imported at great expense and sold in Boots the Chemist, and the heel of our lord is devolved to a set of civil servants whose bitter loathing of the rest of us increases in inverse proportion to the amount of power they don’t wield and the amount of money we don’t have.

It’s brilliant. Modern life is brilliant. There’s the telly and twitter and books on Kindle. There’s the breakfast dilemma (cereals contain gluten, bacon has fat in it, and eggs are poison: everyone now makes smoothies, although next week we will discover that smoothies kill you. I promise you).

But before the lords and the mud there was a place, not a country, but a land, and some people lived in it. It covered the world.  It was one land.  It had great woods that bristled with wolves and bears. Beavers made lakes in it. Lions flopped about under trees or stared with orange eyes at … well, at you, if you were unlucky. People lived on the grasslands, on the world’s brow, on the bony ridge of the world’s brow, there they made little homes from stone and fire. And the birds flew, and they drew them. And the dogs ran, and the deer ran, and they drew them. They drew the mountains and the sky on their skin, blue or red because they knew the mountains and sky lived under their skin. They knew the trees and the weeds. When the sun shone, it shone in them. When the rain fell, it rained in their bones, and in the bones of the trees and the bones of the wolves and the bones of the rivers (what do you think boulders are? DO CONCENTRATE). In the snow they slept and waited, and their hearts sank into the earth, burrowed through it into the waiting roots of birch and beech, and slept there, until the sun came again.

The people didn’t bother much with understanding things beyond the movement of the sun and stars, and the turn of the year and the rhythms of life and death. They didn’t need to because they knew something very wonderful, which is that when you stand on the earth your feet go right to the centre of the world. That your body does not end at your skin. That what you are made of is the world and everything in it, and at your furthest extremities, the patterns of stars are freckles on you. The sea is the amnion from which you climbed as a child. The earth is the body of your mother, which you still cling to, are still in. The other species are not as separate from you as it appears: without one another they will fail and die. Without them, you will fail and die. This is the unassailable truth of what it is to be alive in an evolved system: you are not you. You are the inevitable outcome of all of it. You are what the system needs to fill the negative space that would remain if you did not exist. You are the expression of all that is necessary right here, right now. If it were not so you would be dead.

None of this was part of the big story they told at those parties. In fact it is not something people feel they can speak about at all. I’ll be honest, I was cautious about writing this letter to you.  If someone tries to say these words, incant this spell, their credibility and sanity are questioned. You know what I’m saying is true: that our story goes back beyond shoes. That the oldest part of the story is about those rolling hills and if you close your eyes you can still feel them inside you: the Cheviots, Uluru, the blue-groined lakes, the scribbled pines on hills, the sea on your lips, the sun shining in you. We call this having a ‘soul’, this feeling of connectedness. But these days we are only really permitted to have a sense of connectedness to other people, and even then it has to be a particular type of connection, one that can be easily dropped, one that carefully avoids, at all costs, any mention of souls or the inner rain, or how it feels to grow leaves through your skin in the spring, bursting fat green points along every bone. You must never mention this. When you fly with the bats, that must be a secret. When the rain makes another world below your feet and you drop into it so you can no longer tell which of the two worlds you stand in, shtum! Don’t say it! At dusk if you happen to put your hand up and pocket the sun for the night, do it like a thief, and put it back in the morning before anyone notices.

This is where we live now.

The world has roofs and central heating and if you’re very lucky, Passive Haus standards that enable you to never, ever feel a breeze on your ankle, never cold feet. You don’t have the smell of a wood fire or the pop-snap of it or the pang of guilt for the doomed woodlouse. There is XBox, XFactor, XXL, .xxx. There is porn and shoes, dvds and the national lottery, which might make you a millionaire. It’s all brilliant! And there are so many of us, and nothing can kill us. We are like gods, and we aren’t forced to be part of anything any more, not the green or the winter, not muddy water or hunger, and death is far away from most of us, most of the time. It wasn’t like that when we had souls. Death was all over the place then.

It’s better now.

Into this comes a new plan for your body, for the body of your mother. It’s so you can carry on heating your whole house and lighting lightbulbs and watching XFactor and being a productive economic unit. It’s a GOOD idea! Doesn’t that sound like a good idea?

Here is the plan: one third of your body and your mother’s body will be sold, if anyone wants it. Which third? Well, that’s up to the buyers. They will sell you and the person they sell you to will break your bones to get the goodness out. They will break the bones of this land.

The United Kingdom has an area of some 94,000 sq miles. Of this, our government is putting 37,000 square miles out to tender, to fracking companies. This area includes our national parks. Our suburbs. Your town. Anywhere where shale gas may potentially be extracted at relatively low cost: the energy companies will be permitted to buy that land. They are doing this because a number of very important Tories stand to profit, personally, from selling your land. Your land.

But you own the land now! It is your land. There are laws protecting that ownership, laws protecting your home, laws protecting the national parks and your right to walk in them and to remember you were born with a soul.

This new thing will override all those old things. Your protections are over. Your ownership of this land, your rights within it, those are over now. Go on, google it.

I am not making this up.

There are substantial problems with allowing this, even beyond its obvious immorality (that one person can profit by selling things which do not belong to them, can profit from destroying things which we all own and need). Fracking is implicated in big problems with contaminated groundwater (on an ‘unimaginable scale’), air pollution, chemical pollution, radioactive pollution, earthquakes, blow-outs and leaks in the USA, where they’ve done enough of it that they’ve started to realise … you wouldn’t want to live near it.

Do you?

I don’t really fit into the world very well, I’m a pebble in a shoe. I live here but not comfortably, for anyone. I don’t speak the right language and I look for people who speak my language and don’t find them. When I look at someone’s face I don’t see what you see. I see a word out of context, marooned on a page with no breath behind it, no story to flock with (for what is a story but a flock of words in motion). That’s what we are now, stranded words, punctuation and we think the page is where we belong, when in fact no word belongs on a page. As soon as you’ve stamped a word onto a background, put a spotlight over it, you’ve removed the best gift any word has, its ambiguity, its belonging to a fluid context.

Stand up and say this, put your breath into it: “Mourning love.”

It is not the same phrase when spoken. You are not the word you are defined as being. The narrow act of definition is one of vandalism.

I write this love letter to you in the hope that you recognise yourself and remember (us) the rivers and the rocks are part of your body. Perhaps you have an inconvenient soul, like mine. If not, you can go and look up the science of problematic fracking: displaced communities, ground instability, contaminated aquifers and groundwater, dodgy things coming out of people’s taps (actually, that one’s quite exiting, although it’s the sort of exciting that you definitely don’t want happening in YOUR bathroom). Or you can listen to your body’s connection to the world. And what you’ll hear is a scream that doesn’t stop.

I am opposed to this sale, to this disenfranchisement of the people from the land, to this act of brutality committed on both the people and their land, for the two are indivisible, I am opposed with my whole body, starting at the stars and ending at the earth’s core.

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What’s it like / it’s like (when the words come home)

An audio version of this post is available here.

It’s like … (and I wrote about this before, because I know this landscape so much better than I know the landscape my eyes look at every day, the landscape that is as strange and as empty of comfort to me as a zoo is to a tiger) it is like

You are in the woods, standing still in thick fur boots, in snow up to your shins, and next to you is the horse, which is always there next or under you, quietly breathing. It is night, clear and luminous and your hands are so cold they ache and the snow has finally sunk through the oiled pelts your riding boots were made of because you’ve been damn fool enough to get off the horse and let it rest a while. Its shoulder is so warm under your hand it’s almost like a noise it’s like

In the bright dark there is a dark dark spot. Among the world that reaches up, thinner and thinner until the end of each branch finds a star, there is something squat and geometric. You knew it was around here, but you haven’t been here and there is no map. Yet there it is, a little cabin, it is like

You asked for help and the trees twisted themselves into this shape to shelter you, it is like

There is no lock on the door, you open it and you and the horse go in together, because that is how it works here. The place is small because that’s easier to heat. There is a stove, cold, you find it in the dark and pull the old ashes out with your hands, onto your knees, the floor, feel for the new wood, curl shavings off with your knife, then the tinder and oily wool, the spark, a flame, then the dark and your breath softly on it, so softly in that little wait where you think you’ve failed. But you haven’t. There is fire now.

It is like that. The words go away sometimes for years. Wait. WAIT STILL. When they come back the trees and snow come with them, a whole world comes with the words.

It is like that, when the words come home.

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TW suicide and depression and all that jazz.

An audio version of this post is available here.

You can’t write about anyone else’s experience of depression, only your own. I got off twitter as soon as the S-word started being bandied about, in connection with Robin Williams. I don’t like being around it. It gives me the heebies. Not in the “I’m a well person and it makes me feel a bit OMG-AWKS” way, but in the “I’ve lost too many friends to this, and lived with it” way. Depression is fluff on the needle. It is the needle bouncing back into the same half-bar of the same song again and again and again and again and again and again and again and again. It is a thought virus your immune system cannot shake. It is the ultimate TSR programme, idling away, idling away your hours, days, weeks, months, years, relationships, life. It is a stain that bleeds through everything you lay over it. It is the black hole into which everything is dragged, it sucks the reassuring words from the mouths of people saying them to you, sucks them and crushes them before you ever hear what they were, while you cling desperately to the ever drawing edge, literally fighting for your life.

“Get help,” they say. Have you tried it? I tried everything. There isn’t help, not on the NHS. Maybe there is for your depression. There wasn’t for mine. Well meaning people say well meaning words. You don’t hear them. You can’t feel people’s proximity. There is no connection. “Oh reach out”, they say. And you do. And it doesn’t help (it made things worse, perversely, for me. Underlined my inability to connect with people, underlined my failure to be, generally speaking, a human).

I was depressed by the time I was 6, and then it just carried on. Since I didn’t know anything else, depressed was normal. Sometimes it was worse than others. But it was always there. It was there when I slept. It was there, waiting for me like the world’s worst lover when I woke.

And then, last year – at the end of last summer – it stopped. The shouty voice stopped. You know the fellow: wakes you up with his list of criticisms. The things you did wrong or did not do. How ugly you are. What a failure you are. The lists of catastrophes that are hanging, Damoclean, above you. The merest breath of air will bring them down and they are of your making, and why didn’t you do better? Why are you so afraid of everything, so pathetic? Other people manage all this. HERE IS YOUR TO DO LIST. WHY AREN’T YOU DOING IT YET/BETTER? Shouty voice was a palimpsest of noise, criticisms written over criticisms. One voice screaming many different things, all simultaneously. Shouty voice was overwhelming, unquietable, as much a part of my sensory tapestry as the unnoticed rattle of the trains, the trains. The trains.

He just stopped. I can remember waking up to silence. Silence. I still marvel at it every day, especially in the mornings, and at night.

This left a strange thing in my head: like a set of rail tracks. The train wasn’t running on them any more. But they were still there, gleaming like … scars. And I would run my thoughts down them, down those shouty rails, because that was all I knew. But it was like going back to a cafe you’ve sat in with your best ever abusive love, except he’s not there any more, you’re only imagining his voice. It was no comfort, it felt like a bad habit. It was definitely a choice I was making, now, to be there on those deserted lines, hunting for a familiar beating, and so I decided to make other choices. I stood back. Weeds grew across the tracks. They’re still there. You can’t see them now. But don’t walk there because you can trip over them.

So that realisation (AFTER the shouty voice had gone) that walking those tracks was a choice, was the first wave.
The second was the realisation (months later – it took months for the grass to grow over those tracks), that I was choosing bad company in order to prop up the terrible opinion shouty voice had had of me. And since shouty voice had now gone: that was another choice I could make differently. I did. Immediately.

That felt good. Again, it took some time to get used to that new choice: the existence of it, the execution, the consequences, internal and external.

Most recently I realised something quite unnerving. Until I was nearly 44 I knew how I would die. And now I don’t. I haven’t quite resolved myself to this new thing yet. Weirdly, this new thing is terrifying. The idea of being dead was my solace. The knowledge I could make that choice, that that was MY CHOICE, was my only real refuge from some terrible times. Now I wonder how I will die: heart, cancer? Any of the million things that carry people off. They all seem so much more painful and brutal than what I had planned. And yet now I have let my own end out of the box I had it trapped in, and watched it scamper back into the wild (to visit me at its leisure, in whatever form it chooses), I find that that difficult resolution of the self to the idea of uncontrollable death, is about life. It is about the moment that exists now: not what you are doing in it, but your presence in it, how that feels, how you fill it with self and not-self.

These changes come like waves up a beach (as with all internal narratives), and there are many more to come. Some I have an inkling about, but many are invisible to me right now. Sometimes, when I am tired or hungry, I hear shouty voice, as if he is calling to me from outside the house. But I do not choose to invest that observation with any emotion. He remains without… without me.

I do not know why nearly 40 years of depression stopped, stopped dead in the course of a couple of weeks. I do not know whether it will come back. It might. I hope it does not. But I am not afraid of it. I am just enjoying the silence NOW.

I don’t have a magic wand to hand you. But here is a handful of slightly enchanted acorns I’ve found. Take what you want:

- I had been practising mindfulness for about 6 months before it happened. I still do. I recommend it. Did it cure me? I don’t know. Try it.

- The Samaritans are good, when you’re sliding down the lip of the black hole. Call them. They are kind. And they will call you back in the morning to check you are still alive. Which is a nice touch. Sometimes knowing someone will do that makes a colossal difference. And you can’t ask your loved ones to do it. It’s too heavy a burden.

- Try everything the NHS offers, but don’t get disheartened. They don’t have a magic wand either.

And if you need to think about ending it because having that option is sometimes the only way you can get through your day, think about it. But don’t do it.

Don’t do it.

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It must come down.

Paedophilia, rape, back-handers, theft of public money, warmongering for profit, the slaughter of thousands every year for profit. The theft of other countries’ – poorer countries’ – money and resources through debt. The theft of the resources of the poor. The punishment of those already on their knees. Sadism. If we haven’t got to ‘murder’ yet, dear reader, we haven’t scratched the surface.

This isn’t a problem of the Tory government – although they do it most transparently. It is a problem of our entire way of life. Our society. Our politics. Our law. Our class distinctions. The way we educate and segregate our children. Our silences, the boundaries beyond which words are not welcome. Our comedy, our mocking. Our obedience. Our assumption of innocence and who we choose to protect with that blunt weapon.

As children, we are taught to colour inside the lines. We are not children. We are the species that conquered the poles, the abysses, the moon. We made civilisations, we knitted a world of abundant food, of art, architecture, of breathtaking machinery, out of mud and mistakes. We are not children. Stop.

Everything, the whole lot needs to come the fuck down. Needs to be torn down. Needs to be replaced by a system where power is truly shared and those hungry for it have no way to keep it, where democracy is truly democratic, Where the first article of our society is a love of humanity, and all else – all else -comes after.

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Cis and bigotry.

I was born in 1969. Two years after being a gay or bisexual man became technically legal, but a very long time (indeed the process is STILL ongoing), before it became socially acceptable.

During my childhood, I recall a great kerfuffle among straights over the word “heterosexual”. There was no need for this word, went the logic, because heterosexuality was normal and needed no label. Of course, the people saying this were homophobes in the sense that they viewed homosexuality as an aberration, a special thing that needed a label. We needed to know who the homos were, because they were They. We didn’t need a label for straights because they were Us. And it was important to label homosexuals as They, because otherwise they might end up mixed in with Us, they might want the same rights as Us, they might pass unnoticed among us and they might end up becoming attracted to Us and then we would have to deal with their horrible, warped sexuality (bear in mind this was adults talking, I was a very small child, listening, and yet to develop any sexuality myself).

That was bigotry. Wanting to label a group of perfectly normal human beings so that you can avoid them / so they never come on to you (they wouldn’t have anyway, darling) / so you know this special group of people get special treatment (which consisted of derision and the denial of jobs and various human rights) is a clearly bigoted position. And I watched it in action in my young adulthood: gay people being actively blacklisted at work for their sexuality. We see that that position is bigotry now, because “heterosexual” is now a perfectly accepted term, and gay people are, to some degree and by some people, accepted.

Yet precisely this position is being adopted by some feminists with regard to the word “cis” (which means “not trans”), and it is being touted as not at all bigoted, because why do we need a word that means “not trans”? Only the trans people need a label. Because they’re the weirdos.

This position is as bigoted, and in precisely the same way as the people who “didn’t agree” that they were heterosexual. It is othering. It identifies one group as needing careful definition and labelling. It identifies the majority as Us, who do not needing labelling.

There is a third way. I turned out bi. I also turned out genderwonky: nonbinary. I’m an “it”, albeit an “it” with a massive set of knockers. I’m not trans because trans is a binary position. And I’m not cis because cis is a binary position. If I were cis or heterosexual I would clasp those identities to my substantial bosom, just as I would if I were a lesbian, or trans. We all get to be who we are, we don’t get a choice in it. So my identity is bisexual, nonbinary.

If you think that your identity magically doesn’t need a name, because it is the default assumption, then you are bigoted, and you are supporting a bigoted society’s bigoted norms and bigoted “outsiding” of people who are not like you.

I don’t have any time for that.

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Advice I would have given me when I first got #MECFS. (#MECFSAwarenessDay)

There are about 250k people in the UK suffering from ME, MECFS, MECFSID, CFS.

The fact we don’t even have one name to call this condition (Myalgic encephalomyelitis / Chronic Fatigue Syndrome / Immune deficiency) says it all.

250k is two and a half times the number of people who have Multiple Sclerosis. I bet if you asked a hundred people if they’d heard of Multiple Sclerosis, most would have, and most would have some idea what it is. But nobody who isn’t directly affected by it / has a close relative with it seems to know what MECFS is, and sadly that includes most GPs (who think it is psychological, when it’s defined by the WHO as neurological); and the UK’s research community is likewise disposed to look into how we can make people think themselves better from this condition. Which is like telling someone with a broken leg to think themselves upright (it isn’t just stupid, it’s cruel).

This is a pretty good defintion.

It affects every system of the body: brain, digestion, hormones, muscles, connective tissue, heart, vascular system, immune response, balance, sight, hearing, temperature regulation. It’s generally very painful. It is variable and a few good hours will be paid for by a few bad hours – or a few bad weeks, depending on how severely you have the condition. Many are completely bed bound by this condition. I spend months each year housebound and too unwell to have visitors. Some people find it worse at certain times of the year (I can do nothing from August to March, but for a few weeks around May I feel almost normal). Some find some supplements helpful, but what helps one person probably won’t help you, because your body and theirs are subject to different stressors. Some get a bit of relief from changes to their diet (I’m less hellish since I went gluten free). There’s no cure. No golden bullet to make you feel better when it’s at its worst. Some people are cured. Most who’ve had it for 2 years or longer won’t be. Over time, most people will learn to live around it – tiny lives with little activity mean no relapses. These people report that they’re improved. What they mean is, they’ve found a level of activity low enough that it doesn’t trigger relapses.

This is how I live.

I love my tiny life. All the fake friends peeled away when I got sick, the people I have in my life now are incredible, solid, kind human beings. I don’t have enough energy to waste on people who aren’t. All the things I thought were important in life peeled away when I got sick, and now the things in my life are just the necessary and the wonderful. You do actually get used to pain, both suffering it and knowing when to manage it with painkillers (a painkiller will require your body to do some work metabolising it. Sometimes therefore taking a painkiller will knock you out for 15 hours because your body just doesn’t have that energy spare. You learn when this will happen and make your choices accordingly. Pain is usually preferable to being asleep, for me). I walk with a stick about half the time now. It’s not as big a deal as I thought it was, before. I’ve found my level. I potter to my allotment plot and do 5 minutes’ watering every few days during a good month. On a good day I can do 10 minutes’ actual work, and the sense of achievement I get from that is incredible. I take my wheelbarrow down with the tools because it’s easier trundling that than carrying tools. I often use my spade as a stick. It is astonishing what you can achieve with five minutes’ work, provided you come back and do the next five and the next … when you can.

I try to see friends maybe twice a month. On a good month. More is a mistake.

When you first get this you think you’ll get out of it somehow. You try all the supplements. You try all the snake oil. You deny how bad it is. You’re scared. You’re increasingly isolated, and that’s scary (but the peace of isolation is also what you need). You’re in pain. You’ll have all this to deal with AND you have to deal with your relatives’ reactions, which can be anything from trying to force you to buy 3000 supplements (don’t. They won’t cure you, they’re just for the benefit of your worried relative, and as gently as you can, you need to say this to them). Sometimes a relative won’t believe there’s anything wrong with you, and will act as if you’re “just lazy” or “just” (JUST!) depressed. Again, as gently as possible, explain this is balls. Gently, but firmly. Your GP will try to make you do Graded Exercise Therapy, or attend CBT sessions. GET has been shown to make most MECFS sufferers worse.

It is very, very hard to police your boundaries when you’re too weak to wash your own hair. You will be short tempered and hard to be around, because you haven’t the energy for discussion or disagreement.

Lots of people DO get better in the early stages. Stay calm. Wait it out.

Some don’t. At some point if you’re one of the ones who stay ill for longer than a couple of years, you will definitely have to deal with depression, because the realisation that your old life has got up and gone is devastating, and it’s not a realisation that arrives quickly, nor is it a realisation that you will get over in a day or two. It’s a grieving process like any other. It keeps coming at you. This is why your GP probably thinks MECFS is caused by depression or anxiety: almost everyone who has this condition badly will suffer from depression and anxiety at some stage. Hang in there. It will be with you for a while, but it wears off. Talk to kind people. Listen to them, too. Don’t wallow in sadness, but do let yourself feel it. Don’t be afraid of that feeling. Don’t be afraid of getting help from your doctor for depression. It’s ok. The depression will pass in the end.

And somehow over the first few years you learn to cope with this, and what emerges is that all of the above can be true and you can still have a great life. I’ve gone through that period of adjustment and come out the other side, and I haven’t ever been as happy about being me, as I am now.

The company (virtual, mostly) of other people with this and similar conditions is lovely. They get it. And talking to them teaches you you’re not a weirdo, you’re not malingering (you will believe you are for a long time, every time you have a good hour or a good day you’ll think “but there’s nothing wrong with me!” – and then the next day it all comes back). You will find strength in their company. You will enjoy your achievements more than you ever did, when they were easy. Your life will contain more wins than it did, when you did a thousand things a day without noticing any of them.

Hang in there. You are stronger than you know, more determined than you know, and cleverer at finding solutions than you know. Life is beautiful.

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