I wake up still ill. I have had this mad infection for weeks, I worried it might be tonsillitis, but it’s not. It never is, it’s stress and a gaping PA schedule. One shift here and one shift there.
My parents come to see me. Have you been living like this, my mother shouts. I explain, when I only have one shift a day or can’t be in the house for my shift cleaning is not a priority. My mother understands but is furious. She cleans and cleans and cleans. And we talk of class and matriarchy and love, a little new born baby. My cousin’s little son keeps me up.
I play her a new song I managed to find on Spotify:
“Hiya, here is Sally a wrench, an urchin from the street
Don’t come talk to me about misery
If you knew what I knew, if you had seen what I had seen
My goodness you would weep”
Structure hogties me. My father returns with a new kettle. The old one broke ages ago. I had a crying fit from it, the smallest thing, the cheapest thing. But so much of a hustle, I can’t both cook, clean and by a kettle.
He is calm and assertive, like me. Angry internally and not in the feisty way of my mother, and he says: They profit from you!
Profit, they earn money on me and then they don’t do their job. I think of Oslo, such struggles, such sorrow. I see myself weeping in her strong arms in the hotel room.
I get back on my feet. I compensate, I make a schedule for my PA’s I shouldn’t have to make. My sweet and funny and very gay friend calls me, we talk about taking good care of each other. I send him my draft for the Queer Mass prayer. Later that evening I have to txt him, saying I can’t go.
I try to be okay with that but I am not, I feel sad and worried, both let down by my body and the stress of malfunctioning structures (not bodies mind you) and like I am letting them down. I post about it on Facebook, and get the sweetest replies.
Yesterday morning I wake up still ill. Still, even though I felt better the other day. It’s a trope. I should stop but I push it. I tend to my impersonal hygiene. Someone helps me get dressed. I get going in a pricey cab, since taxi service just isn’t to trust.
We get there sickly early. I ask my PA to get me a coffee from the place next door, the caffeine rushes through my veins, ticks my heart into speed. Enhances twitching nerves and vocal chords.
We are supposed to be at the venue now, I try to take the lift upstairs. But it doesn’t work. Finally we meet a janitor who explains to us that the lifts don’t open on that floor until my talk is scheduled to start. I laugh at it then but inside something turns a switch.
And then I talk and talk and talk. Medical model. Bodies. My body. Other bodies. Her body. Power. Powerless. Cripplets. Sex. Desire. And it comes closer and closer and closer and in the end I am so tired of it. So infuriated and ill, my throat is heated and my skin is buzzing.
But you can’t tell, she swears. No one but her can tell.
The anger in my last talk is visible though, I fairly scream at the audience. I won’t put up with this. I won’t put up with inaccessible venues, crip-phobic attitudes, the feeling of being undesired.
We wrap up and I tell her as we leave: Yes I am going to go to that club now, but I will pay a price tomorrow.
And then we leave.
I feel okay when we go there, we speak of nail polish, how our brains are wired, what we do and don’t. And then we talk about going out for food first and I hear the tire in my own voice as I say, I don’t feel like walking those stairs more than twice.
It’s so inaccessible I weep inside, all the time. And I swore, in that talk with those crips I swore I wouldn’t put up with it. And look at me now. My mantra all the way down and in to the office backstage is it’s okay, it’s okay, it’s okay. I feel tired and ill but food helps. I get changed, or undressed, but I can’t help but think of my crooked legs. My tensed arms as they hold my weight up on my walker. And to be fair my tits aren’t that fabulous anyway.
We walk out of the office, I spot her almost immediately.
She spots my tits, and then my smile.
We hug, firmly.
I move on.
It gets crowded. I get in the way, my wheels take up space. People trip and don’t say sorry. I am too short; they don’t see me as they walk by. Legs like pillars, high heels, no crooked feet.
And then I spot it. The rush, the clattering of heels and boots. They run. They put one foot ahead of the other quickly and they run. The hunt, the escape, the catch and the wrestle. Able. Able to run. I look at my hands around my walker handles. My feet. Invisibly marked - no running. And the switch turns squeeking inside my chest. I walk around even more restless, I get tired, unfocused, even sadder for “no reason”.
I spot her again. She spots me as well, and not only my chest, and not only my walker.
How are you doing?
Not so well. I am tired, I need closeness.
We cuddle. And even more. She takes me backstage to a crazy concrete stair. It’s cool and silent, just us. I get to sit with her and be just the way I am. But it sticks with me. Able. Disabled.
When we get out of there it is even more crowded, she has to go work. I find them, the runners. They have stopped running now and they are sweet and kind. I try to engage in conversation but the dam the switch has broken keeps flooding it all out.
I walk backstage when she is done. The other runner has gone home now and we sit opposite each other. I weep. People come and go into the office and I don’t care. I speak of all, but the image of them running. It’s not okay, I can’t be this trigged by other peoples physical abilities. It’s weird, I am mad.
She asks me if I want go, and I say no. Throughout that night I lie. No it’s okay, I can stay. I am alright yeah, sure.
I say I am tired and it’s been a rough day, that’s true. No I don’t feel up to do what I normally do. Yes I desperately want power and authority and strength, that’s all I want right now but I can’t bring myself to do it. I am too tired. Please don’t assume it’s because I want the opposite. I would say if I did.
We finally go home. I curse the stairs on the way up. Yeah, they say. It’s not okay, it isn’t.
And then we walk and walk and every step is a knife in my chest. I can talk because it is too hard to even breath. I am too rough and I am too jealous. I am jealous of you running, chasing, escaping.
If I could I would ask, what’s it like, running?
I have to take several stops on the way to the cab rank just to breath. I don’t say anything. She says little. We find a cab, I get in and stutter my address to the driver. I cry as silently as I can, clasp her hand in the dark. I am mad, I am mad, this is dirty, this is too rough, I can’t be jealous. I can’t desire normality; it’s not good for the fight. I have said. I weep at the fact that I feel like such a fake, here have been telling people we shouldn’t compensate. Then what do I do? We shouldn’t expose ourselves to emotional pain, what do I do?
I am inconsolable when I finally get into the apartment. I lose it already in the corridor, big tears roll. I shiver. She says I am tired, she says I have had a lot of work put onto. I think of the fact that tomorrow consists of two uncovered shifts in my PA schedule. Isolation, inability and loneliness. And you can choose I think, you make choices all the time. And right now I can make none.
At the cusp of morning I tell, she urges me firmly and I do. I focus my gaze on my feet and I say. I felt so disabled. I felt so in the way and stuck in that space. And then I saw you run, you ran and she ran after you and I can never give you that. I am not that good.
It’s all full of the medical model bullshit I have slaughtered all that day and that is what sickens me the most, even I don’t get away.
She says it’s normal, I weep, she comforts me, she leaves.
When she’s gone I can’t sleep. I still haven’t slept, thirty-five hours later. Oh, so many thoughts, why didn’t I tell? Why is there so much shame? Why is there still that assumption between ability and power and why does it affect me even with people who know me the best? Why do I make such bad choices?
We talk of choice during mid-day: No but you have to understand I say, in situations like this I don’t have any choice, and perhaps I chose to do less productive things because at least that is a choice I have. And I think she gets it.
But is it this harsh not having PA-care because you are extra rough now? She asks.
No, I say. It is always this rough. But I cover it up, I can push through a day of isolation and no independence every now and then. I shut my mouth and plough through. But now I can’t.
But why? She asks me. Why!?
I don’t want to be a bother, I say.
We hang up and I call my mother. A mother of a daughter stuck between a rock and hard place. A mother of a minority member. A mother of one of those discriminated against. We talk about our common worry of becoming bitter. Sometimes people don’t understand she says, and I don’t want to tell them all, and all, and all of the time. And I agree.
Her understanding is comfort. After a while we move on to talking about patriarchy and capitalism. The price of the struggle.
