Below is the song ”My shit’s fucked up” by Warren Zevon.
http://www.youtube.com/watch?v=D2aUJF3gdog
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.
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!”
As Miami Ink’s Ami James put’s it “WE FOUGHT TO MAKE, NOW COMES THE FIGHT TO STAY ON TOP!”
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