‘Gender Queer Femme, what is that? I get confused, I don’t know what to say, because people now say non-binary. Back when I started thinking about this stuff, that term didn’t exist, so I used to say ‘Gender Queer’. Now there are all of these young trans-guys exploring their femininity and drag identities, and calling that Gender Queer Femme. More people are coming out and the idea that there are other kinds of gender has become much more well-known. As a result, I constantly question my gender, or if I’m using the right words to explain my gender. I feel kind of invisible, isolated, as if I’ve gone out of date. That cultural explosion is relatively new: before that, I was still invisible but in a different way, because I’m Femme. But at the end of the day, no matter how many times I ask myself, I’m not ‘one or the other’.
Imagine a man in a dress; that’s the closest I can come to describing myself. Usually most people don’t see it, they don’t get that I’m trans. They just think I\’m trying to get a bit of attention. When I first started to think about dressing in overtly feminine clothing, I didn’t know how to do it, I’d never done that before, I wasn’t even sure I was allowed to do it. One of my partners at the time encouraged me; she was like ‘Come on! Of course you’re allowed to’. That’s when I started to really Femme it up with the huge tutus, corsets, stripy tights, and bows. When I first realised I was trans, I talked to one particular trans-guy about it a lot, and he helped me find my way through, understand why things always felt so odd as I was growing up. This body – it doesn’t quite fit, what I have here doesn’t match with how I see myself in my head. But I’ve thought about all the options, taking testosterone or having surgery, and that doesn’t fit either. If I did those things, I’d still be me, just in another kind of body that doesn’t fit.
Over time, I’ve given up on giving a shit about how other people see me or what they think of me. This is me, take it or leave it. How I see myself, I’m like play-doh, my body can do anything, it’s all over the place, changing and morphing into different shapes. How I imagine my body is different from what’s visible.
There are times lying in bed when I can feel I have a nice fat cock laying there against my thigh. It’s all in my head, I can do and be anything. It’s like being in this (motorised) chair; this is a part of my body, this helps me do things I couldn’t do otherwise. Fuck, this chair has meant so much. For the first time in years I started to go out. Neighbours on the estate I live on would come up and ask me if I was new around there, had I just moved in? Because they never saw me before. But no, it’s just that before, my body couldn’t do all of the things I wanted to do, so I used to stay in. The chair has changed so much about what I’m able to do and how I see myself. I can be in my kitchen with music on and in my head I\’m dancing, I’m getting down. All that’s going on for someone looking from the outside is that I\’m bobbing my head around a bit like that, but me, I’m dancing. When I’ve got my reggae on and I’m jigging around in my chair, woah, sometimes it is fucking weird because I feel something moving on my chest. I look down and there are these chest flaps. I guess they are called tits; I don’t know where they came from, they’re not part of MY body. That’s weird.
When I fight against my body that\’s when I’m fucked, when I surrender that\’s when things become manageable. When I listen and respect my limits, when I use the tools that I have available to me, when I use my chair, use my stick, use my P.A., that’s when things get better for me. That’s when I’m more able to cope. Which is the exact opposite of all the things that the government and people who aren’t even sick keep telling us: the endless urging from non-crip people to fight harder, try harder – that actually makes things worse. The idea that we should struggle, try to get our bodies to do just that bit more. Now that is what will seriously fuck me up.
Yes, there’s a difference between what my body can do and what I want to be able to do. Illness makes limits. Yes, I get tired, pain is annoying. When I was in the states recently working as an activist, on my last night at that crip gathering, I was so exhausted that I fell asleep. I tell you, once I fall asleep, I’m gone. It meant I slept through my last night with all of these wonderful people I had met. We were going to sit around the campfire together and we were going to talk and I was going to be in the midst of all that for one last night, and I missed it! I fucking slept through it! Yeah, there are times I’m frustrated, but I do’t want to complain too much about this casing, this body. I’m pretty grateful for all it has carried me through, it’s kept on going through some pretty rough times. It’s a good casing really, it does a lot of the stuff that it’s supposed to do.
Going out on the BDSM scene for the first time I was nervous. I remember the first time I ever went into a play space – of course hardly any of them are accessible, but I found one. The minute I entered that space, a male sub fell to his knees in front of me and asked if he could kiss my toes. I thought ‘Well, Hello!’. I was wearing an amazing pair of silver stiletto platform shoes but I also wondered if he was just a ‘Devotee’. You know, those people who exist on the crip scene, who treat us like a fetish – a chaser – and I didn’t want that. But it seemed like he was for real, and I’m up for that. I like meeting new people. Like I said there are hardly any spaces which are accessible, so I don’t go out much. There is one particular venue I like where they have a huge Roisey rack where you can position the person you are playing with laid out horizontally, and then get up on the rig yourself; there are all sorts of ropes and supports you can hold onto. People say to me ‘You’ve got a really interesting play style’, but that’s just how I can do it, otherwise I wouldn’t be able to remain standing!
Activism is everything to me. That’s how I describe myself, I’m an activist, that’s what I do. I don’t see myself so much as an entertainer or a performer – sure that’s how I do a lot of the activism, but that’s just the delivery method. ‘Not Dead Yet’, that’s been a really huge part of my campaigning and DAN: the Disability Action Network, especially fighting against this Assisted Dying bill in Parliament. For fuck’s sake, we don’t want assisted dying, we want assisted living! I’m out there on the streets; as long as they can wheel me out there, I will be there. The chair can be useful in a street protest, I can maneuver myself between more able bodies and the cops. So I make sure to use that technique when I can – the chair is a good pretty good barricade.
When my daughter was born, she was really ill. The doctors assumed the problem was developmental. They didn’t even do any tests to see if it was an infection. They just left her. She was very small, but that wasn’t a problem; even if it was developmental, what the fuck? I had such a shit fight to get pregnant, trying to get my body to do that was difficult. The main thing I wanted at the end of my pregnancy was for my baby to be alive. I really wanted my baby to live. When the Doctors thought they knew what was wrong with her, they acted all sad, like she was already dead.
That’s when I began to wake up as an activist, to realise that it’s really difficult for disabled people to come into this world and survive. Even if you manage to get here alive, there’s no place for us, we are not even supposed to survive. At the hospital, talking in their hushed tones, with their sad faces, the hospital staff said they were giving me a room to myself, so my baby and I could be alone. ‘So you can have time together’. Bullshit, they didn’t care about me, they didn’t care about us; they just wanted us to be out of the way, so the other people with ‘normal’ babies weren’t being bothered. I was supposed to start grieving because she was being left to die, because it was probably better if she did.
With a little baby that small, if they have an infection it doesn’t take long before there can be lasting effects, but they weren’t doing anything. Her belly button was green! I asked the nurse ‘Is it supposed to be like that? Look, she is green’! Then they took notice. The nurse realised what was wrong, they gave my daughter medicine, and she is still here with us 20 years later. That was the beginning for me. Thank you my darling daughter for waking me up and showing me the way. That was how I became a disability rights activist, long before I got ill, long before anything happened to my body, because my daughter showed me how hard you have to fight to even be allowed to stay here.
Jet Moon in collaboration with Dennis Queen.