‘There’s a documented history of EDS*. You can see it, trace it through photographs of the old sideshow traditions of the circus, all of those people who lived in freak-shows or made their living as contortionists. You know those pictures of people – ‘The elastic man’ – where they can stretch their skin right out from their neck, that’s type one EDS. Or when you see a particular type of backbend in a photograph of a sideshow performer and you think ‘that’s EDS’ because that kind of backbend is only possible with hyper-mobility. A person without EDS couldn’t do that. Those entire contortionist families who are part of a circus – that’s EDS. So there’s a whole invisible, yet visible history of people’s survival and the ways that they have used their disabilities as a way to survive. It’s there if you know what you are looking for.
There’s a common thread of EDS in my family, as it’s hereditary. I can see who has passed it down, though it’s not talked about. I think it’s really recent as an actual diagnosable thing. EDS is still something that is very difficult to get a diagnosis of, even though it can be affecting your ability to live a ‘normal’ life. It’s hidden in plain sight. I can also see that there’s a hidden history of sex work in my family, people doing this kind of work to get by and the different names it is called. My great grandma, we were all told that she was an opera singer back in the days of music hall. Except there are no records of there being an opera singer by that name. In those days theatrical terms were used to describe another type of work: ‘an opera singer’, ‘a dancer’, ‘an actress’.
I think there’s a connected history between EDS and sex work, because this is a very rare condition, supposedly one in 5,000, and yet I can sit in a room with other sex workers and find that there are several of us there with EDS. What are the chances of that?
Sex work. What I would say about that now is different from what I would have said ten years ago when I started out. I don’t really know, but I used to be very much into telling that story where sex work is all about my agency, and an expression of who I am and my sexuality. There’s a lot of pressure from other sex workers to tell a certain story, but also a lot of competition, an undisclosed layer of agreement where everyone always talks about how much money they are making and how well they are doing. There’s a lot of performance that goes on there. It’s just getting by, isn’t it? That’s what it is for me. Now I’m at a point where I’m trying to scale back the sex work I do; I’m just so bored with it. I’ve kept my most reliable clients, the ones with whom I don’t have to do so much because they genuinely like me, otherwise they would have gotten sick of me and buggered off long ago. But sometimes that familiarity of affection makes it worse, as I can’t really show that I don’t give a shit.
I can’t be bothered to go through all of the palaver of finding new clients, all the vetting and screening, and putting up with dickheads and wankers. I wish I could just go back to brothel work, finding somewhere where I can just go and work for one day of the week and walk away with a wad of cash. It’s a head fuck, working with these well-off clients anyway, all their delicate sensibilities, the way they expect to be treated. At some point I always open my mouth and offend them. All of this admin and advertising and marketing, I never wanted to be a businesswoman. If I wanted to be a businesswoman then I would just go out there and do it.
With a brothel all I have to do is go there and fuck whomever walks through the door. In those places mostly, it’s just ordinary guys: bricky’s, labourers, taxi drivers, workers – these guys who have been saving up, putting ten quid aside every week out of their pension fund just so they can come and see you. Usually there is a way to get on with most of them. I miss that about brothel work, that skill of watching someone walk through the door, having to assess in a matter of seconds flat what they were looking for – whom I could be to them. At the end of the night, after fucking 10 or 15 guys, I would feel like a champion; I felt invincible, I felt like *Rarrr*! So in my body, it felt like I had just wrestled 20 lions and won. Then I just walk away with the cash.
Middle class work, there’s something I notice about that, mostly it\’s a lot of sitting and standing still for long periods of time. In these new smart ‘live to work’ offices, there’s a lot more freedom to get up and move, to walk around when you need to. That sort of work, sitting or standing continuously, I can do that for about two or three days before it starts to make me unwell, before muscles and internal organs begin to twist in ways they shouldn’t or there is the chance of a dislocated joint or an injury from the sheer unnaturalness of those demands. I need to move, I’m always moving, I love to dance, it’s who I am, how I express myself in my body.
I get a lot of freedom through my work. I might not always make a lot of money, but I have TIME. Time to focus, time to think, time to rest when I need to, time to spend with the people I care about and to go where I want to. Time to take care of my health, time to prepare a special diet that helps me stay well – that takes a lot of time. I can’t do those things if I am always occupied with working these shitty ‘respectable’ jobs. What is it that people are actually doing anyway? Often it’s NOTHING or worse, sitting in an office, moving around scraps of digital paper, filling up the world with more bullshit. It’s ditch digging for white collar workers.
With my Anarchist crew, it’s funny to have people think that’s the kind of politics I’m active in. I was campaigning long before I ever met them, working on all kinds of stuff. When I decided to focus on taking care of my health, I let go of most of those other things and kept the fun stuff. My crew was what was left, because it’s a bunch of mates – above all, that\’s what it is. I love doing naughty things and I love running away from the police, it’s a right laugh. The real giggle is that with all of the left having this uproar about Brexit and Corbyn – all of the struggle to make some kind of meaningful action and the chaos of fighting, it’s those naughty Anarchists with their jokey, pranksterish, badly behaved ways that have managed to raise the profile of some of the really serious issues, especially in the East End.
The infamous paint bombings of hipster cafes in Brick lane, the stuff around the ‘Ripper Museum’, and also the noise parades in Soho and Whitechapel, we’ve got these issues up and out there to the point where people are seeing and reading about them, seeing what the effects of gentrification and beating down the poor are. Every demonstration I go to lately, there’s always these statements from the organisers saying that they don’t support any kind of violent direct action, when as far as I know no one was even considering doing that anyway. But what the fuck is that about? We are in a system that IS doing violence to us every day.
There’s a thing about pain and memory, there are the times when you are in pain, when it\’s impossible to forget. Then there is the time after that when you are not in pain, when it’s very hard to remember exactly what that pain felt like. Somehow, within us, we have a mechanism for forgetting. I can’t remember having a time before illness, this wasn’t something I ‘got’ or something that happened to me. It’s always been there in my earliest memories. Not that I was fully conscious or had that knowledge of what it was, but it was always there. It’s in the way I move. My body moves and behaves differently because of this, so that also forms how I think and how I experience the world.
Me and my Anarchist crew, we went to an art gallery together, a gentrified place, like loads of that area, but this was in a building where loads of us used to squat. One of our mates was doing his cabaret show there and we went along to support him. This place, which used to be ours, is now full of fucking hipster wankers being ‘edgy’. All through the show, our mate was taking the piss out of them, but the audience didn’t quite know what to make of it. That’s the style of his cabaret: it’s satire, so I don’t think the audience were sure if they were really being insulted or not. We were all up at the front cheering him on, and at the end of the show he sang the song ‘You’re all a bunch of cunts’. We all joined in, turning around to face the audience, pointing at them and singing ‘You\’re all a bunch of cunts’. At that point it became obvious, it was serious – we really did hate them. Watching their uncomfortable reactions was priceless. What a fucking circus.
*EDS: Ehlers-Danlos syndromes
Jet Moon in collaboration with Anon.