On getting down to the nitty gritty...

Kiss Kiss, Bang Bang!

I am sorry but I am getting a bit fed up now. Slightly sick and tired of how incapable people are of seeing what this is really about. The fact that what I do still evoke so many strange feelings. Why is it that there are so many things we handle better than this…
Why is it so hard to respect personal choice, why is it so hard to respect that the consensual choices of others might not be what you like. But, the opportunity for others to make those choices and turn away from lives prescribed to them by gender, class, race, age, size…whatever you would like, is what makes this world worth living in.

I am sorry but we must get personal now. This here world of assumptions of femininity is not big enough for the both of us. I am telling you, dear creators of “open” and “accepting” spaces, do not fuck with me… and beware, cute is a scare!

……

I am in the tackiest of clubs. I have told her to sit up straight to make it is easier to endure the strange feeling of being a zoo animal, little girls don’t come here. Little girls with frames don’t come here. They don’t wear silk blouse. They don’t wear silver crosses. Amongst leather pants and whips hanging from a belt, amongst eyes that measure me as a falsely conscious little girl not yet having found her place at the feet of the patriarchy.

I survive that evening because I cling on to her physically. When they look at us I look at her. There is a fatigue in her eyes the same as mine. A tire of those eyes that invade us, that measure our bodies and what we do.
When she is preoccupied with other things and I roam the vast club on my own I seek the eyes of other Ladies.
A woman with her boi on sofa…the knife slowly caressing hir fingers… She looks at me with that same fatigue, we sigh and I nod at her. I know what it’s like.

That’s when he approaches me. I must confess I didn’t like him that much prior to this either. He is the invasive kind, the exploiting kind, everyone in a space like this are vehicles for lust and that is his lust, he thinks.
I have been waiting for her which I clung to, who I told to sit up straight so that something would be endurable in this place, he looks at me with that icky middle aged man smile.
“Aaaw, little miss…” he says. “How are you?”

I am shocked. I am shocked at how easy he does it. How easy he belittles and ignores me. I am sure he knows what I do. I am sure his partner, who has seen me work stripes into shivering strong backs many a time before, have told him what I do. I am sure he knows that even if I am a girl I am no one’s girl.
I hope my eyes burn with that famous black soot I have been told they have when I tell him that I feel fine although I haven’t been able to play here since I didn’t feel safe.
Yet when I leave I am turned off, furious, hurt and sad. My invisibility was so hard to face. His, the middle aged man’s, part in that so obvious it stung my eyes.

…..

Let’s talk a bit about what he couldn’t cope with. Power. Girls with power. Let’s talk a bit about why the idea of the dominant woman is still scary. What have I done? What are we doing?

I grew up in an environment that respected my femininity, and the power I ascribed to it. I call my upbringing a matriarchy – my mother and her sister, my cousins and me, formed a bond of femininity and power. It stemmed from my grandmother and her sister, from a strong sense of survival and belonging.
I never knew of no patriarchy, I never knew that women were not allowed to have power. I never knew I wasn’t allowed to decide for others if they wanted me to do that.

And I was always just as puzzled when I saw the mindfuck in their eyes. In the eyes of men and women alike, when it didn’t match. When my body didn’t match my mind.

Or that’s not right, I match perfectly find with all my expectations of myself. It’s their expectations that I don’t match.

You see it’s not about exploitation, not about abuse and not about oppression. The way she cooks for me and the man, always a man, peeks in at us and asks me if I shouldn’t do that – as the girlie girl.

I don’t tell him to fuck off. I tell my glorious butch girl to tell the “nice” man that that is not how we do things. And she does because she loves me. She loves me when she squirms under my touch, when she bends her neck for me. And I love her when I do it, I love her the most when she gives all of her to me – I love her the most when we rip that patriarchy up by the roots, when I insert the matriarchy that fed and clothed me into the void that the loss of man-made worlds made in her.

I never understood why this was challenging. I never understood why women, girls, I, couldn’t do this? What prevents me? What would force me to do otherwise?

I am sorry but my mother, the Pentecostal, married, heterosexual mother of two, never taught me any of this. She taught me to hold my head high and give myself with love to others, and they will love me too.

So please, put your assumptions, your false notions of female sexuality and femme identities elsewhere. Please don’t put them in my lap – and mind you, don’t force them down my throat. I don’t really do that shit you see.
Ask the girls who have been mine, butches, femmes, bois and grrls alike what they felt when they were with me. What we did when we shared that love my mother told me to share. How we catered to one another.
Ask the patriarchy if it hurt when we ripped its roots.

…..

I leave that club numb. We agree it was bad night, a really bad night. I give her a quick hug before I get in the cab. I tell her she will pay for dragging me all the way there…. She knows I am more serious about then I look. I giggle as she blushes.
On my way home I write a letter of memories and paths travelled for all the women and men that ever giggled sweetly at me assumed I was nice and humble only because I was cute.

To patriarchy with love, best wishes - little girls of the matriarchy!

On crip concentration

I am trying to concentrate. Trying my best to write a paper of the notions of dressed and dressed up. It is going very slow, I have all week but I wanted to have it done by now.
The reason it’s slow is not my own, I have read up on all the literature I have made an outline, and I have written half of it already. No, it’s not me; it’s what’s around me these days.

You see a concentrating as a crip demands a different kind of attitude then concentrating overall. Right now I need to concentrate despite being confined in this apartment until I get my new taxi card, which I so slow I haven’t even gotten to sending in the applications yet. You see, before I actually do that I need a medical permit, and to get that medical permit I need to go see a doctor, and to see a doctor I need to leave the house, and yes when leaving the house I might need a taxi-card.

I have arranged things with my PA’s so that I at least can get my self to and from University for my lectures. Otherwise I have no idea. And all the people I call and ask about this, the people I assume should know how things work and be able to give me straight answers about when and how and why and where, they seem to know just as much as me or even less.
It always puzzles me how they can say things that are so bizarre you wonder if your life is a sitcom or it the person on the other side is an alien with no manners whatsoever.
Now follow, an authentic conversation just had today…

I: But how do I make this work? I am stranded in my apartment otherwise!
Bureaucracy of Babylon: Well I don’t know, people don’t move here often…..

What in heavens name is that! Well know I don’t know what to do when a hurricane hits, you know we don’t get that often. Oh you say you’re dying, oh well that has never happened before.
You are saying you are unable to leave your apartment other than together with your PA’s and only at the times that you have scheduled them to come and pick you up…oh well, you are saying there is from now on no spontaneity in your life. You worry about being isolated. Well you see, I couldn’t help you even with the simplest questions about that, people don’t move here often so I wouldn’t know.

Well, let me tell you why people don’t move here often. It’s because this bureaucracy of Babylon is a set of bondage ropes around my shivering arms, it’s because you cripple me and make me invalid. You make sure my studies are not worthwhile, you make sure my concentration is lacking since I need to take breaks to cry and scream with worry.
You make me question if my time is well spent in this city when there is nothing but trouble here. You make me stare at this screen at the black words hammered down on the electronic whiteness through a haze of tears and anguish.

I am not built for this, I worry too much anyway. My heart is that of a rabbits, jumping quickly under collar bone. My constitution is one in need of safety and warmth. Uncertainty makes me ill.

Somewhere I do realise that this is a dam breaking. I haven’t cried about any of the hardships I have encountered since I moved here, I have only pondered through stoically, so I should have seen it coming now. When am partially safe in my own home and most of the things work out for me, then there is a space for me to crash like this.

I came to this town with visions, and I do still keep them. I am sorry Babylon but there is now way in which you will break me. I know you aspire to do that, even if you haven’t verbalized it for yourselves yet.
You think that crip girls like me are satisfied with little. Well, dearest Babylon – listen up when I say I am never satisfied. That is also part of my constitution. That of the escapist dreamer who saw herself dressed in Victorian velvet walking through the vast room of a mansion when she grew up. You say that is way too much. You say I should settle in with a day job and a few swims in the heated disabled people’s pool for leisure activities.
I say give me that mansion. Give me that an apartment in the city. Give me spaces to write and perform within. Give me my lovers’ heated kisses on my neck, give me the traces of my presceans across their bodies. Give me whisky; give me the force of darn good song. Give me the softness of tea and milk and the warmth of my army.
Give me all the heavy scented perfumes there ever was in the world.
GIVE ME MY LEATHER!

Bless my family, my army, my muses and my flexible PA’s when all is madness as it so now.
And I know there are loving people above me, who brush away the clouds gently as they look down, there is a face that looks like mine, there is curly hair and swelling hearts and there is a great uncle.
Who looks at me as he smiles, because he knows what fighting is, and perhaps he wished he could have gotten all that I have know. I wish I could have met him, we could have sang songs; he could have told me it was going to be hard, this crippled life.
But now, as she his fringe falls in his eyes, and I recognize the shape of my own lips on his face I know that he’s saying.

På dôm lisch jänta!
(Go get them little girl!)

On this morning....

Good morning Capital, good morning blog. It’s a rather pretty sunshiny day. I am chirpy even though I slept four hours or so. I woke up by the door slamming and Landlady returning from the shops, in a white moment of fear I worried it was eleven o’clock or so. She said it was about twenty minutes past eight. And since then I have been up.

Even though we do disagree about my identity, even more so after discussions on femme and crip that took place yesterday, I really like living with her.
Even more I enjoy that she is (it seems) the only one unable to see my femme identity as a valid identity. I am glad so many glorious brainy femmes cover my back.

The time difference between Stockholm and London made things rather late last night, but so much fun had. And I am delighted to see that the much overdue episode of Fishy Femme Fiction is still coveted. And I’ll take images of close proximity muses with me all over today. I am sure I will be a smiling girl indeed.

In fact I am thinking my martial arts muses need to fight each other at some point. Oh, come on girls! It could be my birthday treat, please? Or for Christmas or New Year’s or whenever, any day is a partying day, right?

I am going back up north on Wednesday. I look forward to seeing my parents and my brother and his family. I long to see those mountains again, to breathe air free from smog. And travel through a country that is my heart, were the roads are my veins and arteries. Those roads are inside my skin now, dirt roads and crackling paving. The house. The strong tall trees that grow around these people for protection that protected me as I grew up.

I long for my father’s language, his storytelling. My mother’s fiery comments and loud laughter. My aunts’ care. Jesus. My grandmothers just steps behind me wherever I go.

I’ll rest when I am home, I might crash for real. I need to read a lot though. I figured I’d do most of it on the bus on Wednesday; four hours should get me far I think. I need to write a lot too. I wonder if I shall bring this laptop or if my parents stationary will do? Am I greedy if I want a tiny computer for my writing? Perhaps not. But I am not rich these days. For Christmas?

I have realised I need to write more cohesively in Swedish as well. As I have said earlier in this blog I have existed mostly in English these days. It’s nice, but of course a bit distancing at times. Even though it’s a language that’s close to heart it is not mine, as such.

I’ll need to work on that “Jesus-piece” for the stage too. That’ll be in Swedish so that will be good. I am thinking it’s well needed. The Pentecostal woman is all you never thought she would be. Indeed. Or more so I am perhaps.

I should get dressed now. I need to ‘femme up’ especially since I am having a meeting with a PA agency this afternoon. Two potential girls for me to interview, I really hope they want to work with me. My personal ass.’s as Kicko would say.

After the meeting I’ll have to sit around at Uni for ever to wait for my lecture. The taxi cards are a bit confining when they run low. I need to get hold of that man today too. Wish me luck.

Watch out for me while I am in you today Capital. I think I might like you now.

On stone-ness...

This post is inspired by Sassafras Lowrey’s post on stone-ness on The Femmes Guide.
The post, in case you’re too lazy to read it, in which case shame on you, is about stone-ness and the identifications of stone butches and femmes. Lowrey discusses the idea that the sexuality of a stone-femme is determined and decided by the link to a stone-butch, and ultimately the sexuality of said butch. That femme's who identify as stone-femmes and/or confess to being attracted mostly by stone-butches in doing so, are portrayed in relation to their butch partners rather than on their own. And reaches the conclusion, that (of course) that is not all there is to it...

In the end of the post there is a question.

How about all of you, do you identify as a stone femme? If yes, how do you define it?

So I thought I’d be a good blogger and answer that, plus it will give some extra time away from my University reading which I really cherish at this point. Lazy schoolgirl as I am.

So, my femme identity. It’s very much built upon force, and the force ascribed to the feminine appearance. This comes from growing up in an environment that very much credited power to femininity and strength to womanhood. In my rural matriarchy the woman was never inferior but seen on her own and valued separately from whomever she chose to part with.
My mother brought me up with a strong sense of dress, she knew that she was no less a woman wearing pants, and I was no less an emancipated young woman wearing skirts. She taught me to bring consciousness into the way I dressed.
To think about how I looked and how others saw me, and she delighted in me playing with that. Having the ruffled skirts collide with a strong sense of power and a sharp mind.

I would say that my femme identity is about contrast in many ways. It’s about a very girlie appearance paired with a demanding power; it’s about enhancing my crippled body and my crooked legs and tiny hands with alluring cleavages and tight fitted skirts. It’s about enhancing what is hot about my own body and what is hot about my mind. It’s about combining my giggling and my fondness for ruffles and flowery tops with those rugged pairs of jeans and that chequered short-sleeved blouse, the three top buttons unbuttoned.

It’s about embracing sexuality, sensuality and strength. But it's also about allowing me to find piece within the fact that my body is frail and weak, that it is petite and in need of shelter from others at times. My femme identity has helped me combined all these things into something that feels good for me, that there is no juxtaposition as such in being strong, girlie, and alluring.

I would call myself a stone femme.
But that doesn’t have anything to do with stone butches, or any butches at all.
I am a stone femme since femme is my major identity, it’s that umbrella under which all my other identities, my rural-hard-working-blue-collar-Pentecostal sense of self, my crip ideas of self, my power and ideas of dominances, my longings to be weak, to crash and be lifted sheltered and comforted, can exist without any problems.

On the latter part of that sentence, I think that that longing to be sheltered and picked up draws me to people with a butch aurora around them. That I know that they are stable and strong enough pick me up not only physically but also mentally.

However, as I have spoken so much about contrast. That sense of power and physical strength within another person also gives me the greatest urge to break that, to know that I am in control of that power and the strength, that it is used to shelter and protect me as I chose.
Furthermore, I thrive on sheltering my partners especially if they are butch-ey, I thrive on that person ‘giving in’ and showing me their own weakness. I long to be that strong sense of ‘home’ and ‘safety’ for another person, I love running my fingers gently over my lovers strong back and tell them that all will be fine.
As much as I long to feeling that persons arms around my own shivering body.

To argue that

‘stone femme’/... / [is a] /..../ sexuality tied exclusively to that of /.../ butch partners /..../,

is not fair.

Not to the femmes who describe their stone femme identity as an attraction to stone butches since it insinuates that the femme is only valid through the butch, and hence marginalizes the femmes and femme as an identity of its own.

Also, it’s not fair to stone femmes as myself. To which the concept stone is not valid in relation to any other person femme, or butch, or whatever, but solely as that centre of me. That place deep inside were I am at rest, where I don’t question myself but accept all that I am. Where all that I am co-exist in every breath that draw.
My ‘stone’ is a cave, a room, within my soul.

A room with a magnificent closet, where linen blouse and massive silver jewellery hangs alongside tulle skirts and tailored power suites, leather gloves and knitted mittens, tops with their sleeves cut off, all my push-up bra’s and my knee-high socks.
Where my heavy perfume and make-up sits next to the Bible and the icons my aunt brought me from Krakow, where there is a place for me to kneel and give praise, where there is a place for me to shout and embrace the fierceness and overthrowing power that my religious conviction is.

It’s a room where I can laugh ‘til I am a wet puddle on the floor. It is a room where I can rest, a room where I can lay down why a sweet soul brings me tea and salty snacks. It’s a place were I kept the secrets people tell me, and the ones I have told them.
It’s a room with a bed where the sheets are never neat, only wet and tangled. It’s a bed where backs are arched and shivering before the hit the mattress. It’s a room where my glitzy nails can make maps on backs, where they pluck gently at the soft hair of slumbering guests.

It’s a room where sun shines in from the window making golden squares on the floor. A room that smells of lavender and sits amongst mountains and fair green shadows. A room that throbs when my heart beats. A shelter, a refuge and the origin of all my dreams.

On my army

In my large novel style project ’The Mermaid’, which has rested this summer and rightfully so, I write about the gathering of an army. An army which sets out to fight death. Usually when people set out to fight death in fiction I just get the feeling they are really seeking it. All the dare-devilistic things that people come up with as exciting and assume is living life to its fullest is often just really stupid. Not to say that you wouldn’t be slapping death on its fingers now and then by doing really crazy stuff, but I would guess that’s mostly of out luck.

I have tried to focus the attention of that army that I am building on making the most of every moment and trying to build a collective that would withstand all deaths trials. And I think I have done pretty well in building an interesting mixture of characters that from the outside doesn’t seem to have any thing in common at all (that was also my major theme for the text, to show that even though we don’t think we share anything we all share as much as we are willing to admit we share…) but that ends up beings closely intertwined for one major reason.

They have all suffered loss: Loss of ability or an appearance that they used to have, loss of a beloved or loss of a place or time. Death is the one who possesses all these things, and hence, in order to, not so much regain them but to teach It that It cannot go around nicking other peoples abilities just like that, they set out to fight It.

Anyhow I wanted to say, that as I wrote that text I began to think that it would be really nice to be part of such an army (even though I do have a flare for taking the lead I wouldn’t have to be the rallying force ;) ) that it would be amazing to be part of such force and such determination.
I realise now that I was very foolish in having these thoughts. Since the truth is that I am already part of such an army.

These past days I have realised that even more. Since I struggled to be able to survive in the Capital I began to see that so many people cover my back. That even though I didn’t know if they understood truly what my life has been about they give me proof again and again of knowing just what I am, and loving me dearly for it.
In this maze that bureaucracy is and amongst all the vipers in the grass that the bureaucrats are I know they walk ahead of me and behind me. To smash their machetes against growing branches threatening to choke me and pick me up when I fall.

I am sorry if I am making it out to be like I didn’t trust you to understand me, it is not so! Just that when I deal with these people telling me my disability isn’t major or consistent enough I wonder if anybody sees that within me.
If anybody sees the struggling that this is. I have known all the time that you have, I am just so grateful to see it now. In my time of need.

So this blog post is to be about my warriors. Those who walk ahead and behind of me and the people that have made up the army I longed for but didn’t see until I was desperate for it.

I have already spoken about my brother in this space, but I will gladly speak about him again. My brother Carsten and his fiancée Emma deserve all the credit they can ever get for always sticking by me and telling me to keep my head up. My brother deserves multiple thank you’s for his never ending fire within, for taking time to ramble in anger with me about how unjust all of this is and for keeping me on the ‘take no crap’-path.

The following where already part of my army before I knew I needed one. They are spoken about as a unit because I really think we are.
Katarina, Kicko and Marie. Thank you for always being interested in what I do. For brining forth your righteous anger with me when it’s needed, for helping me lay down my burdens by the whisky-cokes and the throbbing dance floors of tacky bars. For laughing with me and making comparisons to other well known crips such as Timmy and Jimmy from South Park and the magnificent Andy Pipkin from Little Britain (if Andy get’s a PA as good as Lou then I must be okay in the end…)
Thank you for seeing above and beyond my disability but never neglecting the fact that it’s there. Tämmy! TäKåKå!

My soon to be land-lady Ulrika, thank you for opening your home whenever it’s needed and especially in such a desperate time, for allowing me to bring all the mess that this has been into your life too and welcoming me with such open arms. True generosity.

Vata-Sister, Hillevi. Thank you for understanding from just the same spot how important a well balanced body is. Thank you for allowing me to ramble for hours on end about spasms and anxiety. We are so alike it scares me at times, but it’s very comforting to know that whatever I say you have felt it too. Long live the achy-shaky vata-hearts!

Last but not at all least my muses. My and Josephine. (in a way you are all my muses but I like giving people titles…okay ;) )
Firstly thank you both of you for an ongoing feast of inspiration whenever I come to think of you. You both share an aura of force and vulnerability than intrigues me deeply and sparks all my artistic fires.

Thank you My, for all your love and your support. For understanding what the important things are and never minding sharing them. For including me in what’s important to you and cherishing my thoughts and ideas. Thanks for bringing me to lovely places to see lovely people for making me part of their lives as I have become a part in theirs. For believing me when I say that I can do this. And reassuring me when I doubt. For sharing faith and strength with me and making me tea when I needed it the most.

And finally, thank you Josephine. For seeing all the facets that make me up and telling me that they are valid. For bringing a somewhat holy wrath to this fight and offering a very hands on support, for sharing ideas, thoughts and memories and building me up. Thanks for allowing me to be vulnerable when I need to and for seeing the absolute force that is me too. Thanks for your never-ending support of my work and your brilliant witty mind.

I have faith; after all I was injected with a massive load of faith growing up, that we shall conquer this. If you stand ahead and behind me now I promise cross my heart that I will do the same whenever you need me! Thank you again – the academy, Gawd, my parents, and my army!


Xoxo, Kittin! (Timmy, Jimmy, Andy Pipkin, Sally, Anne Bonny!)

On my brother, Warren Zevon and I

Below is the song ”My shit’s fucked up” by Warren Zevon.
http://www.youtube.com/watch?v=D2aUJF3gdog

I heard it on the radio yesterday and it instantly stuck. It is by far the best song ever written about having a body that (by age or other reasons) doesn’t work the way you would like it to…

“Let me break it to you son your shit’s fucked up… the shit that used to work it
wont work now.”

Recently as I have been planning my move to the Capital, which has been a very emotional ride, I have spent a lot of time crying in the bath, but equal time being picked up and pepped by glorious friends and family, I have come to think more and more about my body and the illness that it inhabits.

I have found that they way I speak and act, the articulate and verbal mind I have worked hard to gain and take pride in using often clouds the real state of my body. That my physical lacking gets shadowed by the way I express myself… It puzzles me that it doesn’t seem to be obvious that I am disabled. I wonder if my crooked legs and tensed hands are overpowered by my seductively unbuttoned blouses and pink lips. If my frame and my shaky way of walking doesn’t show cause I tell people I believe in

“a Theatre that resurrects and builds a community… that through the
juxtaposition and commonality of words and flesh aims to give all people a sense
of strength and pride. A Theatre that rattles as well as it dazzles...”

Today I met with my brother. We were born three months too early and the lack of oxygen through our underdeveloped lounges to our brains marked us permanently. It gave us a brain damage known as cerebral pares made our legs spasmodic and stiff and our balance poor. Growing up we never dwelled on this. Even though we spent months in hospital and hours after hours in sweaty gymnasiums with out physical therapists. We were happy, smiling and safe kids. Brought up to believe that we lived because of a reason but never sheltered from the injustice that come to those who are different but taught to fight through it. Taught that everybody has a something that is painful in their life, and that it didn’t have to be physical.

My brother is one of those intentional beauties. He’s hot- I can say that because he is my brother. Well groomed and casually smartly dressed in a way that I can only aspire to become. When I saw him today, sheltering his stepson in his tattooed arms and kissing his forehead, I came to think about how we view our disabilities and what it has come to do with the way we view others.

I have often been told I am very ‘Zen’, that I accept all that come my way are not very easily aggravated when thinks are not what I want them to them. I think this has a lot to do with my inability to move freely while growing up. Acceptance of the status quo was crucial for my survival – if I had blown every small thing that wasn’t the way I wanted up and become angry about it that would have taken so much energy.

Being this mindful also made me very aware of my own body. I wonder if my brother and I share that. If he too knows exactly where every stiff spot is, where every joint is when it aches and what every muscles does when it spasms. If he wakes up in the morning feeling run over, with pain rushing through like waves hitting the white sands of pain.

The paragraph above is also something I have been told I do a lot, I write about pain. I write about bodies and dirt and blood, other people say it’s icky and strong. I never see that. Sometimes pain is like an axe splitting your backbone, sometimes is like a pair of hands pulling the joints of your elbow in separate directions until it clicks. It’s not my fault; it’s the way things actually feel.

I have thought I didn’t dwell on my disability. But I have realised now how much of the work that I do that really is body centred, how my disability has given me a fascination of the able-bodied body and what it can do. How that has driven me into directing and acting, how my exploration of my own body and it qualities has given me a greater sense of what is perceived as normal and what is perceived as deviant, and what I ascribe to these two concept. My body has forced me into being still but given me a vivid imagination and an understanding of the written word because of it.

Because of my disability and the way others perceived me due to it, I felt the necessity to well articulate and driven. To rise above what other people saw as the sweet disabled girl. But it’s only recently and from others telling me about it, that I have begun to see the juxtaposition between these two images an how well I use them and thrive on using them. I like to think of myself as a mindfuck. I thrive on not always being what you perceive me as. I love how my awareness of my body and its sensuality succeeds not only in drawing people in, but also in rattling the close-mindedness that I too often meet while out and about.

But recently I have wondered. When being told I am too well to be given a PA when I move to the capital and having to tell people that I assumed knew what my disability meant for me in real life, once again, that I cannot mange on my own. I worry about passing as able-bodied even though it is very very visible that I am not. It puzzles me, and I don’t know what to do. What to change about my appearance and the way I act in order for them to give me what I need to survive. Of course I know that the answer is nothing, of course I know that it’s not a disadvantage that I am this verbal and driven. I know I have fought hard to become that and that it what has made me me. Still I wonder what they want a disabled person to be, who they see when they think of one, and what that person’s everyday life is like.

I wonder if my brother worries about this. If he too worries about the rapid decay of our bodies and if our liking of fitted clothes and dressed up appearances is an act of resistance against death. I know we could do better, exercise more, eat healthier, and sleep better. But we’re not like that, at least not now. Now is all about fighting the decay best we can anyway. It’s about unbuttoning the top button on my blouse before I meet with the municipality’s disability conslour; it’s about marking our beloved deviant bodies with needles and ink, about sheltering the kids that are important in our lives. To tell them what others taught us. Your body is only yours. Your mind is solely your mind. And your life is worth living.

Dearest beloved brother, my darling beautiful.

We know of pain and monotony we know of dread and bondage in its true sense. We know of deep fires and heavily beating hearts. We know of scars and casts and plastic tubes. But mostly we know of love. We know of laughter you and I. We know of freedom and rushing speed. We know that bodies are but bodies, muscles are but muscles. We know that weakness is needed in order to be strong and stillness is needed for there to be force.

As Miami Ink’s Ami James put’s it “WE FOUGHT TO MAKE, NOW COMES THE FIGHT TO STAY ON TOP!”