Showing posts with label writing. Show all posts
Showing posts with label writing. Show all posts
Tuesday, January 19, 2010
A New (to me) Voice
A post about disability and feminism that echoes what I and other WWD have spoken about, esp. those of us with CP. I haven't the energy to comment coherently at any unfamiliar blogs, but the author of this post might like to check out the link to the FWD group blog in the post above this one. FWD is making changes and giving us a space to talk about our lives as women with disabilities. I can't write at the moment, life hurts too much, but everyone who posts and comments there says something that means many things to me.
Sunday, October 11, 2009
Feminists With Disabilities Unite!!!
Feminists With Disabilities/Forward is a splendiferous and wonderful new group blog written by some of my favourite feminist disability bloggers. They have some beautifully written and fiercely intelligent posts up all ready. Click, read, and spread the (accessible) word.
Sunday, June 10, 2007
Living
I found the following on an email list I lurk on. There was no link or any other reference, this is the entire speech.
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This was a speech made by Pulitzer Prize-winning author, Anna Quindlen at the graduation ceremony of at American university where she was awarded an Honorary PhD.
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This was a speech made by Pulitzer Prize-winning author, Anna Quindlen at the graduation ceremony of at American university where she was awarded an Honorary PhD.
"I'm a novelist. My work is human nature. Real life is all I know. Don't ever confuse the two, your life and your work. You will walk out of here this afternoon with only one thing that no one else has. There will be hundreds of people out there with your same degree: there will be thousands of people doing what you want to do for a living. But you will be the only person alive who has sole custody of your life. Your particular life. Your entire life. Not just your life at a desk or your life on a bus or in a car or at the computer. Not just the life of your mind, but the life of your heart. Not just your bank accounts but also your soul.
People don't talk about the soul very much anymore. It's so much easier to write a resume than to craft a spirit. But a resume is cold comfort on a winter's night, or when you're sad, or broke, or lonely, or when
you've received your test results and they're not so good.
you've received your test results and they're not so good.
Here is my resume: I am a good mother to three children. I have tried never to let my work stand in the way of being a good parent. I no longer consider myself the centre of the universe. I show up. I listen. I try to laugh. I am a good friend to my husband. I have tried to make marriage vows mean what they say. I am a good friend to my friends and them to me. Without them, there would be nothing to say to you today, because I would be a cardboard cut out. But I call them on the phone and I meet them for lunch. I would be rotten, at best mediocre, at my job if those other things were not true.
You cannot be really first rate at your work if your work is all you are. So here's what I wanted to tell you today: Get a life. A real life, not a manic pursuit of the next promotion, the bigger pay cheque, the larger house. Do you think you'd care so very much about those things if you blew an aneurysm one afternoon or found a lump in your breast?
Get a life in which you notice the smell of salt water pushing itself on a breeze at the seaside, a life in which you stop and watch how a red-tailed hawk circles over the water, or the way a baby scowls with concentration when she tries to pick up a sweet with her thumb and first finger.
Get a life in which you are not alone. Find people you love, and who love you. And remember that love is not leisure, it is work. Pick up the phone. Send an email. Write a letter. Get a life in which you are generous. And realize that life is the best thing ever, and that you have no business taking it for granted. Care so deeply about its goodness that you want to spread it around. Take money you would have spent on beer and give it to charity. Work in a soup kitchen. Be a big brother or sister. All of you want to do well. But if you do not do good too, then doing well will never be enough.
It is so easy to waste our lives, our days, our hours, and our minutes. It is so easy to take for granted the colour of our kids' eyes, the way the melody in a symphony rises and falls and disappears and rises again. It is so easy to exist instead of to live.
I learned to live many years ago. I learned to love the journey, not the destination. I learned that it is not a dress rehearsal, and that today is the only guarantee you get. I learned to look at all the good in the world and try to give some of it back because I believed in it, completely and utterly. And I tried to do that, in part, by telling others what I had learned. By telling them this: Consider the lilies of the field. Look at the fuzz on a baby's ear. Read in the back yard with the sun on your face.
Learn to be happy. And think of life as a terminal illness, because if you do, you will live it with joy and passion as it ought to be lived".
Friday, January 12, 2007
Written for a creative writing class a few years ago...
[I've been going back and forth over whether or not I should post this here. At the moment, I've decided that I should. And yes, I am rather fixated on writing about invisibility - there is a reason for that, you know.]
BECOMING INVISIBLE
2002
The difficulty is knowing where to start, what to tell, what not to tell. The difficulty is knowing whether or not to tell at all. The moral responsibility I feel that makes me want to lay it all in front of the world, the pressure to tell what cannot be told, what cannot be heard, what cannot be borne continually nudges at me. But I want to forget what I know, hide it, avoid it.
And so I vacillate, bouncing back and forward nervously on my courage, trying to convince myself that it’s safer, better this way, that I’ll save myself the terror of disbelief. But I am pricked by something inside me that instinctively wants to regurgitate what I know, consequences and cowardice be damned. But where to start. If I think too long I know I’ll never start. So I stop thinking and just jump in. And start with feeling.
The feeling of fingers on flesh. The harshness of the distant clinical touch, the reciprocal revulsion. But that’s no start. It’s too distant, you have no idea what I’m talking about, do you? And so cowardice wins. This round at least. So try again.
The insistent hum of the fluorescent lights. The sharp shock to the retinas of the reflected glow off the white clinical walls, the terrified isolation. And that doesn’t work, either. The difficulty is obvious, I’m sure you’ve picked out the flaw already. And cowardice, or its better dressed sister, self preservation, wins this round too. We’ll try again, shall we?
A child stands in the middle of a room. She wears a white gown. She is surrounded by men - well, mostly men, who are also wearing white. They stare, and discuss, and scribble on pads of white paper. The child is staring too, but she is not talking, and can write nothing down. She is almost naked under the gown, wearing nothing but green cotton underpants with white spots. She stands with an unfamiliar rigidity, her body stiff, fear layered on a everyday tension. She tilts to one side slightly and there is less natural movement in that side. She stares, but she is not looking at the men, her gaze is fixed on a spot past their heads. And unlike the men in the room, her face does not hold a confident arrogance that can simultaneously take, assess, and discard its object without a second thought, it is a blind stare that turns in on itself and has no object but escape. The men talk amongst themselves, ask endless questions that are addressed to, and answered by each other, even though the child is the subject of the clinical inquisition.
Every now and then she is ordered to walk up and down the room and they throw around disconnected words and phrases like, ‘spastic movements’, ‘unnatural gait’, ‘inflexibility’. Or one of the white-coats leaves his seat to lift the child’s arms away from her body and hold them in midair for what seems like hours. Or another will ---
But no, this way doesn’t work either, it’s boring, easily ignored. We’ll go down another path. How about this?
You stand in the middle of the consulting room. The cold air from the air-conditioning lifts goose-bumps from your exposed flesh. It feels like you have been standing for hours, your left leg is starting to weaken, to wobble slightly, and it takes every bit of self control you have to keep standing up straight. The doctors stare at you, and talk about you using words you don’t understand. They call you ‘the patient’, and look through you coldly, scientifically. Although you don’t know exactly what they are saying, you know they are picking out all things about you that are wrong, that don’t work as they should. Every time one of them looks at you, they find another thing wrong.
You stand there, shivering, and you can feel yourself becoming nothing more than a collection of broken parts, legs and arms and a brain, damaged and defective. You stand there until you can’t even remember your name, or how old you are, or anything else about yourself, other than what is wrong with you. The room seems to get bigger and bigger, and the empty space around you is endless and unforgiving.
From a great distance the piercing eyes of the doctors continue staring at you, and look right through you. You can feel a series of glass shells surround you, one for every person in the room. They slide around you, one by one, slowly, smoothly, without making a sound. And at the point where the indifferent gaze of each of your observers becomes too much, you can hear a metallic twist and click, like the key in a lock, shutting you off from the world. Until at last, you are surrounded by a dozen of these glass shells. And inside the shells, deep inside yourself, you feel another empty space open up, black and cold. A space filled with the almost unbearable pain of forever being looked at, but never being seen, of always being observed, but never being known. But you will try and pretend for many years that the space does not exist, until the terror of it will cause you to spend a night trying vainly to fill the space with handfuls of little pea-green pills. But this will not work, and you will spend the rest of that night crouched over a bucket painfully vomiting into it the pills, and ---
And definitely not. I am undecided as to whether or not that works, but I have no doubt that it is possibly too painful, too manipulative of my audience, perhaps too unforgivably gratuitous. So I will try out my third and final option.
Mending the flaw in this whole drama, there needs to be an ‘I’, there is a ‘she’ and a ‘you’, but there is no ‘I’. You have been expecting it, I know. But that’s all I know. I don’t know how to put myself into this, I don’t want to put myself into this. I can’t. There is no ‘I’ here, there cannot be. I do not exist, I do not feel, I do not breathe. I am not here, I cannot breathe, I cannot feel, I cannot exist. I am invisible.
*~*~*~*~*~*~*
BECOMING INVISIBLE
2002
The difficulty is knowing where to start, what to tell, what not to tell. The difficulty is knowing whether or not to tell at all. The moral responsibility I feel that makes me want to lay it all in front of the world, the pressure to tell what cannot be told, what cannot be heard, what cannot be borne continually nudges at me. But I want to forget what I know, hide it, avoid it.
And so I vacillate, bouncing back and forward nervously on my courage, trying to convince myself that it’s safer, better this way, that I’ll save myself the terror of disbelief. But I am pricked by something inside me that instinctively wants to regurgitate what I know, consequences and cowardice be damned. But where to start. If I think too long I know I’ll never start. So I stop thinking and just jump in. And start with feeling.
The feeling of fingers on flesh. The harshness of the distant clinical touch, the reciprocal revulsion. But that’s no start. It’s too distant, you have no idea what I’m talking about, do you? And so cowardice wins. This round at least. So try again.
The insistent hum of the fluorescent lights. The sharp shock to the retinas of the reflected glow off the white clinical walls, the terrified isolation. And that doesn’t work, either. The difficulty is obvious, I’m sure you’ve picked out the flaw already. And cowardice, or its better dressed sister, self preservation, wins this round too. We’ll try again, shall we?
A child stands in the middle of a room. She wears a white gown. She is surrounded by men - well, mostly men, who are also wearing white. They stare, and discuss, and scribble on pads of white paper. The child is staring too, but she is not talking, and can write nothing down. She is almost naked under the gown, wearing nothing but green cotton underpants with white spots. She stands with an unfamiliar rigidity, her body stiff, fear layered on a everyday tension. She tilts to one side slightly and there is less natural movement in that side. She stares, but she is not looking at the men, her gaze is fixed on a spot past their heads. And unlike the men in the room, her face does not hold a confident arrogance that can simultaneously take, assess, and discard its object without a second thought, it is a blind stare that turns in on itself and has no object but escape. The men talk amongst themselves, ask endless questions that are addressed to, and answered by each other, even though the child is the subject of the clinical inquisition.
Every now and then she is ordered to walk up and down the room and they throw around disconnected words and phrases like, ‘spastic movements’, ‘unnatural gait’, ‘inflexibility’. Or one of the white-coats leaves his seat to lift the child’s arms away from her body and hold them in midair for what seems like hours. Or another will ---
But no, this way doesn’t work either, it’s boring, easily ignored. We’ll go down another path. How about this?
You stand in the middle of the consulting room. The cold air from the air-conditioning lifts goose-bumps from your exposed flesh. It feels like you have been standing for hours, your left leg is starting to weaken, to wobble slightly, and it takes every bit of self control you have to keep standing up straight. The doctors stare at you, and talk about you using words you don’t understand. They call you ‘the patient’, and look through you coldly, scientifically. Although you don’t know exactly what they are saying, you know they are picking out all things about you that are wrong, that don’t work as they should. Every time one of them looks at you, they find another thing wrong.
You stand there, shivering, and you can feel yourself becoming nothing more than a collection of broken parts, legs and arms and a brain, damaged and defective. You stand there until you can’t even remember your name, or how old you are, or anything else about yourself, other than what is wrong with you. The room seems to get bigger and bigger, and the empty space around you is endless and unforgiving.
From a great distance the piercing eyes of the doctors continue staring at you, and look right through you. You can feel a series of glass shells surround you, one for every person in the room. They slide around you, one by one, slowly, smoothly, without making a sound. And at the point where the indifferent gaze of each of your observers becomes too much, you can hear a metallic twist and click, like the key in a lock, shutting you off from the world. Until at last, you are surrounded by a dozen of these glass shells. And inside the shells, deep inside yourself, you feel another empty space open up, black and cold. A space filled with the almost unbearable pain of forever being looked at, but never being seen, of always being observed, but never being known. But you will try and pretend for many years that the space does not exist, until the terror of it will cause you to spend a night trying vainly to fill the space with handfuls of little pea-green pills. But this will not work, and you will spend the rest of that night crouched over a bucket painfully vomiting into it the pills, and ---
And definitely not. I am undecided as to whether or not that works, but I have no doubt that it is possibly too painful, too manipulative of my audience, perhaps too unforgivably gratuitous. So I will try out my third and final option.
Mending the flaw in this whole drama, there needs to be an ‘I’, there is a ‘she’ and a ‘you’, but there is no ‘I’. You have been expecting it, I know. But that’s all I know. I don’t know how to put myself into this, I don’t want to put myself into this. I can’t. There is no ‘I’ here, there cannot be. I do not exist, I do not feel, I do not breathe. I am not here, I cannot breathe, I cannot feel, I cannot exist. I am invisible.
*~*~*~*~*~*~*
Tuesday, January 9, 2007
[Monograph for university course 2001] The Tragic Body
I am sick to death of my disability being thought of as a major tragedy in my life and the lives of those around me. The real tragedy is society’s reaction to disability. Because it not only has a lasting and damaging effect on people with disabilities, but because it also has a lasting and damaging effect on society itself.
People with disabilities are the only severely discriminated against and oppressed group that anyone in the world, no matter what their age, sex, race or income level, can be dropped into at any point and time without warning. So however the able-bodied community react to and treat us will inevitably rebound on them.
Living with a disability can be many things to those of us who are directly affected by it. It can be, and often is; painful, frustrating, annoying, exhausting, frightening, irritating, time consuming, costly, isolating, permanent and much more. But one thing we almost never find it to be is tragic.
Those of us with disabilities rarely refer to our disability or ourselves as tragic. Tragedy is a label foisted upon us by people who have no idea of what our lives are really like, and who don’t particularly want to know. They think our lives are so dreadful and we must all wish ourselves dead, because they do not want to deal with our reality and existence, and wish us dead to save themselves the trouble. And we cannot defend ourselves or explain ourselves because tragedies aren’t supposed to make any noise or argue; they must be silent, blank, still and ideally, dead.
I believe that the real tragedy for people with disabilities is society’s inability to cope with them. It is the neglect and abuse of us. It is the systematic denial of our needs, wants and desires. The denial of the fact that we are not solely and totally our disabilities, that we might have souls and spirits and hearts and dreams, and passions and loves and hates, also. The denial of what we can give to others – both because of and regardless of our disabilities. Their denial of our capacity for love and support, our ability to help and care for those around us in as many different ways as are open to able-bodied people.
Ultimately, society tries to, and tragically often succeeds in denying our humanity, our right to live full lives, our very existence.
People with disabilities are the only severely discriminated against and oppressed group that anyone in the world, no matter what their age, sex, race or income level, can be dropped into at any point and time without warning. So however the able-bodied community react to and treat us will inevitably rebound on them.
Living with a disability can be many things to those of us who are directly affected by it. It can be, and often is; painful, frustrating, annoying, exhausting, frightening, irritating, time consuming, costly, isolating, permanent and much more. But one thing we almost never find it to be is tragic.
Those of us with disabilities rarely refer to our disability or ourselves as tragic. Tragedy is a label foisted upon us by people who have no idea of what our lives are really like, and who don’t particularly want to know. They think our lives are so dreadful and we must all wish ourselves dead, because they do not want to deal with our reality and existence, and wish us dead to save themselves the trouble. And we cannot defend ourselves or explain ourselves because tragedies aren’t supposed to make any noise or argue; they must be silent, blank, still and ideally, dead.
I believe that the real tragedy for people with disabilities is society’s inability to cope with them. It is the neglect and abuse of us. It is the systematic denial of our needs, wants and desires. The denial of the fact that we are not solely and totally our disabilities, that we might have souls and spirits and hearts and dreams, and passions and loves and hates, also. The denial of what we can give to others – both because of and regardless of our disabilities. Their denial of our capacity for love and support, our ability to help and care for those around us in as many different ways as are open to able-bodied people.
Ultimately, society tries to, and tragically often succeeds in denying our humanity, our right to live full lives, our very existence.
[Monograph for university course 2001] The Marginalised Body
In today’s world, with the importance placed on physical ability, strength and beauty, it is easy to forget that an entire section of our society has marginalised, ignored and made invisible, by these beliefs and convictions. For too long people with a disability have been excluded from life because our bodies are not within the range of ability and appearance that is deemed acceptable by society. A society that adheres to the simplistic belief that what is beautiful on the outside must be beautiful on the inside; and therefore what is deformed, misshapen, ugly, and disturbing on the outside, must also be these things on the inside.
The body has been used for centuries as a metaphor for internal states of mind, beliefs and feelings. With literature and movies such as "Phantom of the Opera", "The Hunchback of Notre Dame", "The Tempest" and "Peter Pan", along with many others, the physical deformities of a character are used to indicate evidence of personality defects. Unfortunately people often forget that this is nothing more than a literary device, and it is not a true and accurate reflection of real life.
Being disabled is not seen as a real valid experience of life, but solely as a metaphor. A metaphor for weakness, a metaphor for eternal childishness, a metaphor for evil and depravity, but not as a real space in which to exist.
If you are disabled, you are only accepted if you martyr yourself on the altar of the world’s perfectionism. If you kill yourself, striving to overcome their prejudices. A dead, inspirational cripple is always much more acceptable than a cripple who lives by her own rules.
It is very easy for most people to look at the marginalisation and isolation of people with disabilities, and explain it away by seeing it as a natural result of having a disability. In this way, society shifts the burden of change onto people with disabilities themselves, and can avoid seeing the very real social conditions that cause our oppression.
The human body is not infallible, that is inherent in our existence. Illness, pain and death come to all of us, therefore we must learn to accept it – in others and in ourselves, or in denying it risk destroying ourselves totally in the process. When we strip away the glittering surfaces of our outsides, of our facades that we struggle to make so perfect. When we strip all that away, all we see, and all we have left is imperfect, flawed. What makes us human are our flaws and our imperfections, our disabilities, and we are no less human for them. That is what makes us human, nothing more and nothing less.
We need to change society’s abhorrence of the imperfect body, which results in an expectation of perfection and perpetual youth. Society does not seem to realise the dangers of focussing on the external as opposed to the internal; and a fixed point in time as opposed to growth, evolution and development; and our insistence on not accepting and intergrating death and disability into our lives. This naïve thinking results in the marginalisation of those of us who cannot or will not conform to these expectations, and creates a slowly decreasing noose that pulls in those standards tighter and tighter leaving the elite few, with physically perfect bodies (or the illusion of perfection – there is no such thing in reality) controlling the rest of us. This total focus on the outside obscures the fact that what is in us that makes us human are our hearts and minds and souls, and what makes us alike are our imperfections and our differences.
It is only possible for someone to be trapped in their physical body if their physical being and ability is the only thing about them that is acknowledged and valued. No matter how paralysed a person is, if they are regarded as valuable for something other than their physical abilities or lack thereof, if they are seen as something other than the sum total of what they look like, then they will never be trapped. They will always be free. Because true freedom is not dependent on physical perfection. True freedom is freedom of the heart and mind, of the spirit and soul, and that can never be taken from us.
Recognising the humanity of people with disabilities is not an act of political correctness; it is an act of emotional and social depth and maturity. It enables us to round out the myths and stories of human experience. The more we can recognise the diversity of our live, the more we can celebrate the commonalities. When we diminish others, we diminish ourselves.
The body has been used for centuries as a metaphor for internal states of mind, beliefs and feelings. With literature and movies such as "Phantom of the Opera", "The Hunchback of Notre Dame", "The Tempest" and "Peter Pan", along with many others, the physical deformities of a character are used to indicate evidence of personality defects. Unfortunately people often forget that this is nothing more than a literary device, and it is not a true and accurate reflection of real life.
Being disabled is not seen as a real valid experience of life, but solely as a metaphor. A metaphor for weakness, a metaphor for eternal childishness, a metaphor for evil and depravity, but not as a real space in which to exist.
If you are disabled, you are only accepted if you martyr yourself on the altar of the world’s perfectionism. If you kill yourself, striving to overcome their prejudices. A dead, inspirational cripple is always much more acceptable than a cripple who lives by her own rules.
It is very easy for most people to look at the marginalisation and isolation of people with disabilities, and explain it away by seeing it as a natural result of having a disability. In this way, society shifts the burden of change onto people with disabilities themselves, and can avoid seeing the very real social conditions that cause our oppression.
The human body is not infallible, that is inherent in our existence. Illness, pain and death come to all of us, therefore we must learn to accept it – in others and in ourselves, or in denying it risk destroying ourselves totally in the process. When we strip away the glittering surfaces of our outsides, of our facades that we struggle to make so perfect. When we strip all that away, all we see, and all we have left is imperfect, flawed. What makes us human are our flaws and our imperfections, our disabilities, and we are no less human for them. That is what makes us human, nothing more and nothing less.
We need to change society’s abhorrence of the imperfect body, which results in an expectation of perfection and perpetual youth. Society does not seem to realise the dangers of focussing on the external as opposed to the internal; and a fixed point in time as opposed to growth, evolution and development; and our insistence on not accepting and intergrating death and disability into our lives. This naïve thinking results in the marginalisation of those of us who cannot or will not conform to these expectations, and creates a slowly decreasing noose that pulls in those standards tighter and tighter leaving the elite few, with physically perfect bodies (or the illusion of perfection – there is no such thing in reality) controlling the rest of us. This total focus on the outside obscures the fact that what is in us that makes us human are our hearts and minds and souls, and what makes us alike are our imperfections and our differences.
It is only possible for someone to be trapped in their physical body if their physical being and ability is the only thing about them that is acknowledged and valued. No matter how paralysed a person is, if they are regarded as valuable for something other than their physical abilities or lack thereof, if they are seen as something other than the sum total of what they look like, then they will never be trapped. They will always be free. Because true freedom is not dependent on physical perfection. True freedom is freedom of the heart and mind, of the spirit and soul, and that can never be taken from us.
Recognising the humanity of people with disabilities is not an act of political correctness; it is an act of emotional and social depth and maturity. It enables us to round out the myths and stories of human experience. The more we can recognise the diversity of our live, the more we can celebrate the commonalities. When we diminish others, we diminish ourselves.
[Monograph for university course 2001] The Forbidden Body
[I wrote this before I had spent much time on the internet and found that there was a lot of writing by people with disabilities in cyberspace. If only the internet had existed when I was a teenager. :-) ]
My pocket Macquarie dictionary defines the word `disabled’ as “to make unable; cripple, incapacitate”. However as a person with a disability you soon learn that this definition is incomplete. You soon learn that there are definitions that are unspoken, unwritten, and it is these definitions that take precedence. You learn that being `disabled’ in the eyes of the world means more than any dictionary can define. Being disabled means being not good enough, not normal enough. Being disabled means you are too much, too dependent, `a fire hazard’. Being disabled means that you must put up with sub-standard treatment in all areas of life. It is more difficult to find a job, a place to live, friends to socialise with. You must settle for a life that is reduced to what the able-bodied community will allow you. But above all, being disabled means being silenced. In a world where every little detail of life is held up to scrutiny by the media, and there are more and more opportunities to learn about lives other than our own, the lives of disabled people as we live them are disturbingly absent.
There is plenty of information about disability available, page after page, and book after book written about people with disabilities, all written by able-bodied professionals, or able-bodied parents of children with disabilities, or able bodied ethicists, but very little of it written by people with disabilities themselves.
We are forbidden to talk about our lives as people with disabilities, yet at the same time, people expect us to talk incessantly, justifying our lives and explaining what is wrong with us, and justifying the assistance that we need, but never really wanting to know anything about who we are. They suck pieces of knowledge out of us, the facts about our disabilities, about what makes us different to them out of us, like emotional vampires, voyeuristic, never wanting to get to know us as people. We are forbidden to talk about our lives, we are too much reality.
The experience of being disabled is very rarely written about with force, and power, and passion, and with the recognition of our physical reality as being an acceptable one, and not something that needs to be `cured’. It is usually written about as a pitiful, pathetic way of living, and one that should always be exchanged for something `normal’. That is, `normal’ as it is designated by others who are looking at you from outside of your life and experience.
The most difficult thing about being disabled is not the physical pain, or the barriers to living life. The most difficult thing to deal with is other people’s perceptions, people’s barring us from existence, assuming that we are not quite human, that is what hurts the most.
Human beings fear the unknown, so that is why those of us with disabilities must tell our stories, all of our stories. The good, the bad, the painful and the difficult, so that we can know ourselves, and others will know us, and therefore there will be less fear. People’s perceptions must be changed, and they can be best changed by those of us who live on the outside, who are not allowed into the charmed circle of `normal’ people, we who see what others cannot or will not see. We can see what others’ attitude can do to us and to themselves. The usual ways of thinking about disability need to be challenged, and in being challenged, need to be changed. Human beings grow through evolving and changing, we are not meant to stagnate in one way of being. Our lives, our attitudes and our progress are not meant to stay the same.
It may be acceptable for others to define how they see us, but it is no longer acceptable for them to define who we are, or how we should see ourselves. That is a definition that only we who live with the reality of being disabled and the challenges this brings can give. It is only we who can define who we really are. And this definition must be taken as real and valid. As people with disabilities we have to demand the right to define ourselves, as WE see ourselves, and not allow who we are to be defined by how others see and react to us. We must show the world that the way they perceive us is only THEIR PERCEPTION of us, it is not who we really are, it is not what we can become.
My pocket Macquarie dictionary defines the word `disabled’ as “to make unable; cripple, incapacitate”. However as a person with a disability you soon learn that this definition is incomplete. You soon learn that there are definitions that are unspoken, unwritten, and it is these definitions that take precedence. You learn that being `disabled’ in the eyes of the world means more than any dictionary can define. Being disabled means being not good enough, not normal enough. Being disabled means you are too much, too dependent, `a fire hazard’. Being disabled means that you must put up with sub-standard treatment in all areas of life. It is more difficult to find a job, a place to live, friends to socialise with. You must settle for a life that is reduced to what the able-bodied community will allow you. But above all, being disabled means being silenced. In a world where every little detail of life is held up to scrutiny by the media, and there are more and more opportunities to learn about lives other than our own, the lives of disabled people as we live them are disturbingly absent.
There is plenty of information about disability available, page after page, and book after book written about people with disabilities, all written by able-bodied professionals, or able-bodied parents of children with disabilities, or able bodied ethicists, but very little of it written by people with disabilities themselves.
We are forbidden to talk about our lives as people with disabilities, yet at the same time, people expect us to talk incessantly, justifying our lives and explaining what is wrong with us, and justifying the assistance that we need, but never really wanting to know anything about who we are. They suck pieces of knowledge out of us, the facts about our disabilities, about what makes us different to them out of us, like emotional vampires, voyeuristic, never wanting to get to know us as people. We are forbidden to talk about our lives, we are too much reality.
The experience of being disabled is very rarely written about with force, and power, and passion, and with the recognition of our physical reality as being an acceptable one, and not something that needs to be `cured’. It is usually written about as a pitiful, pathetic way of living, and one that should always be exchanged for something `normal’. That is, `normal’ as it is designated by others who are looking at you from outside of your life and experience.
The most difficult thing about being disabled is not the physical pain, or the barriers to living life. The most difficult thing to deal with is other people’s perceptions, people’s barring us from existence, assuming that we are not quite human, that is what hurts the most.
Human beings fear the unknown, so that is why those of us with disabilities must tell our stories, all of our stories. The good, the bad, the painful and the difficult, so that we can know ourselves, and others will know us, and therefore there will be less fear. People’s perceptions must be changed, and they can be best changed by those of us who live on the outside, who are not allowed into the charmed circle of `normal’ people, we who see what others cannot or will not see. We can see what others’ attitude can do to us and to themselves. The usual ways of thinking about disability need to be challenged, and in being challenged, need to be changed. Human beings grow through evolving and changing, we are not meant to stagnate in one way of being. Our lives, our attitudes and our progress are not meant to stay the same.
It may be acceptable for others to define how they see us, but it is no longer acceptable for them to define who we are, or how we should see ourselves. That is a definition that only we who live with the reality of being disabled and the challenges this brings can give. It is only we who can define who we really are. And this definition must be taken as real and valid. As people with disabilities we have to demand the right to define ourselves, as WE see ourselves, and not allow who we are to be defined by how others see and react to us. We must show the world that the way they perceive us is only THEIR PERCEPTION of us, it is not who we really are, it is not what we can become.
Thursday, December 21, 2006
This is how it began...
[I wish I could say that I now no longer have to live with the isolation that I described in this piece, the isolation that I felt when I wrote it, but that would be a lie.]
"THE INCUBATOR"
Copyright 2001
There is a connection between the loneliness I feel now and what I must have felt as a baby in the incubator. I realized that newborn babies have no sense of time whatsoever. Three days must have seemed like three lifetimes and then some. With no awareness of the events that break up time, that separate day from night, hour from minute. No knowledge that care continues. Each feed the first and last, each brief physical contact the only one in a lifetime. And always the desperate aloneness that stretches for eternity, the panic that there is something that I desperately need, that I cannot put into words and ask for. And now I know that because I never had it then, now I can never really have it at all. So the loneliness that I feel now echoes what I felt them, and seems to stretch beyond time, and will never end. But I don't know how it is possible that I have survived this, what I went through when I was younger, and what I am still enduring. I don't think that any human being should have to go through life feeling this fundamental lack, this emptiness.
Enclosed in a bubble like a bug caught in amber, trapped and at the mercy of those whose power far outweighed mine. They had the power over life and death, survival and ..... The only power I had was that of resistance. I could resist their insistence on my lack of value, resist their doom laden proclamations of a worthless life, nothing more than a vegetable (and I always wanted to know - what kind of a vegetable? Carrot, cauliflower, cabbage - what?), and fated to be inferior in thought, feeling, movement. I resisted their expectations that I would lie placid and accepting of whatever they did to me. Scooting endlessly up and down, up and down, testing out the confines of this plastic bubble they condemned me to. I pulled out the wires and needles attached to me, these insulting non-human things that were meant to help me live. I knew I could live without those substitutes for reality. They say that the nurses could never keep a nappy on me, I moved around so much. So I crawled up and down endlessly through my own shit, the only thing in the silence that was me, that was real and human, and didn't beep and hum and pour chemicals into me. I was the one who was in control and I showed it. The nurses nicknamed me `the little abortion'. Three months too early, and very inconvenient.
"THE INCUBATOR"
Copyright 2001
There is a connection between the loneliness I feel now and what I must have felt as a baby in the incubator. I realized that newborn babies have no sense of time whatsoever. Three days must have seemed like three lifetimes and then some. With no awareness of the events that break up time, that separate day from night, hour from minute. No knowledge that care continues. Each feed the first and last, each brief physical contact the only one in a lifetime. And always the desperate aloneness that stretches for eternity, the panic that there is something that I desperately need, that I cannot put into words and ask for. And now I know that because I never had it then, now I can never really have it at all. So the loneliness that I feel now echoes what I felt them, and seems to stretch beyond time, and will never end. But I don't know how it is possible that I have survived this, what I went through when I was younger, and what I am still enduring. I don't think that any human being should have to go through life feeling this fundamental lack, this emptiness.
Enclosed in a bubble like a bug caught in amber, trapped and at the mercy of those whose power far outweighed mine. They had the power over life and death, survival and ..... The only power I had was that of resistance. I could resist their insistence on my lack of value, resist their doom laden proclamations of a worthless life, nothing more than a vegetable (and I always wanted to know - what kind of a vegetable? Carrot, cauliflower, cabbage - what?), and fated to be inferior in thought, feeling, movement. I resisted their expectations that I would lie placid and accepting of whatever they did to me. Scooting endlessly up and down, up and down, testing out the confines of this plastic bubble they condemned me to. I pulled out the wires and needles attached to me, these insulting non-human things that were meant to help me live. I knew I could live without those substitutes for reality. They say that the nurses could never keep a nappy on me, I moved around so much. So I crawled up and down endlessly through my own shit, the only thing in the silence that was me, that was real and human, and didn't beep and hum and pour chemicals into me. I was the one who was in control and I showed it. The nurses nicknamed me `the little abortion'. Three months too early, and very inconvenient.
Friday, December 15, 2006
A Touchy Subject
[Originally written on 10 December 2005]
A few things I've read on the internet today have reminded me of something I've been meaning to write about, but avoiding. Avoiding for years. I think it is time to write about it, but I don't know if I've got the time to go into it tonight
Touch. The lack of. Touch hunger, tactile deprivation, touch starvation.
As with anything, I write about this from my own personal experience, but I know it affects others (and of course, not just people with disabilities), too. It's another one of those subjects, the dance-around-it subjects, the if-we-ignore-it-it-will-go-away subjects.
I don't suffer from my disability - I never use that word in that context, that's something that others assume of me, but I do suffer from some things, I suffer from people's attitudes, I have suffered greatly as a result of my family's abuse of me, and their tacit approval of others who abused and assaulted me. I also suffer from touch starvation.
Living with a disability is to live a life full of contradictions, and this is one of the biggies. On one hand, you are touched a lot - especially as a child - docters and nurses poking and prodding and pulling at you, physiotherapists torturing... ahem, sorry, giving you physiotherapy, family and carers helping you walk, climb stairs, get up out of chairs, up off the ground, etc.
On the other hand - unless you are lucky enough to have family and friends who can think past the prejudices and assumption, and some people with disabilities are that lucky - you learn from an early age that you are essentially untouchable. People shy away from you, literally - I've had people physically recoil from me. We are seen as repulsive, objects of pity, asexual, less than human. Unclean. Some of us can go for months, years (years is probably an exaggeration - even in my case, but oh, it feels that long, sometimes) without affectionate touch from another human being.
OK. This appears to be all I can write at the moment. I have difficulty with this, not because I'm embarrassed about it, but because it is one of the most painful realities in my life.
Here is one of my favourite quotes relating to this whole topic, although I wasn't referring specifically to sexual touch writing the above, it is on the agenda, though. The article the quote comes from is excellent.
"Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It’s easier for us to talk about - and formulate strategies for changing - discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction." - Anne Finger http://www.newint.org/issue233/fruit.htm
I will write more on this, soon, eventually.
[And I did, surprisingly, on 5 February 2006]
My Skin - A Touchy Subject - Part 2
My skin has shrunk into itself
after almost 32 years of not being touched
except to remind me of how untouchable it is
and to remind me of its gaping flaws and wounds that people will fall into
if they come near me
The pain of this leaves me two seconds away from dying
every day
Years of physiotherapy - being pushedpulledstretched
into painful awareness that my body is worthless as it is
So it must be tortured into normal
It didn’t work
I never became normal (Thank God!)
but I tuned out my body
so I didn’t feel the pain
Only time my parents touched me was for exercises that hurt so much I wanted to cry and scream - but I was too scared to.
Huge adults leaning over me shoving my legs into shapes they weren’t designed for, folding up my legs and leaning on them with their full 6 foot basketball/rugby/sports playing weight
Yelling at me when I refused to do the exercises - lazy, lazy, lazy...
Cold eyes staring at me when I came home crying - pushed down steps, tripped up, punched
Sharp words slicing, blaming, condemning
All I wanted was a hug, to feel safe, wanted
Comforted (I can’t say, think or write this word without crying)
“You can’t be in pain, I can’t feel anything”, said my father, smile locked into place with mocking laughter
“Growing pains”, said the doctor - I didn’t know what muscle spasms were until I was well into my twenties
No one told me that they were a normal - but painful - part of spastic CP - not the doctors, physios.
Did they even know?
Psoriasis came when I was sixteen
My skin growing extra layers of hardness
Layers that my heart had not yet developed
Leaving me still hopeful that I would be touched
with gentleness, affection
and for no other reason than to give joy
and comfort
and pleasure
Occasional glimpses of what could be, what I could have
Relationships over before they really began
With men who I couldn’t have stayed with, even if they hadn’t left first
I am glad they left
But I learned why I had a body
And that if I could enjoy sex (and how I did!) then my body was fine, practically perfect
Unfortunately, this is one of the few things I like best when there is another person
I love sex
But I can’t be casual about it
And now only want it with someone I love
and who loves me (Woody Allen notwithstanding!)
My tears dry up before they fall
pulled back inside myself
by a heart that has become a desert
deserted
Words are the poorest substitute for a touch given with awareness
but they are all I have
And, no, a massage wouldn’t help, getting a pet wouldn’t help (I am poor, I can barely afford to feed myself)
The emptiness is too overwhelming
I want someone to look after me for once
And how do I talk about the fact that sometimes, if you have a disability, you don’t get looked after (there is this odd belief that all people with disabilities have someone to look after them - perpetuated by people who don’t know anyone with a disability) - no one ever believes me
It’s true, even if you don’t believe me
Sometimes you get nothing, not even the basics
Cruelty and neglect are equal opportunity - they do not discriminate
Nobody wants to hear any of this
I don’t want to hear any of this
But it is my life
Right now
Today
But please
Not tomorrow
This isn’t a poem, this is the only way I can write about this.
A few things I've read on the internet today have reminded me of something I've been meaning to write about, but avoiding. Avoiding for years. I think it is time to write about it, but I don't know if I've got the time to go into it tonight
Touch. The lack of. Touch hunger, tactile deprivation, touch starvation.
As with anything, I write about this from my own personal experience, but I know it affects others (and of course, not just people with disabilities), too. It's another one of those subjects, the dance-around-it subjects, the if-we-ignore-it-it-will-go-away subjects.
I don't suffer from my disability - I never use that word in that context, that's something that others assume of me, but I do suffer from some things, I suffer from people's attitudes, I have suffered greatly as a result of my family's abuse of me, and their tacit approval of others who abused and assaulted me. I also suffer from touch starvation.
Living with a disability is to live a life full of contradictions, and this is one of the biggies. On one hand, you are touched a lot - especially as a child - docters and nurses poking and prodding and pulling at you, physiotherapists torturing... ahem, sorry, giving you physiotherapy, family and carers helping you walk, climb stairs, get up out of chairs, up off the ground, etc.
On the other hand - unless you are lucky enough to have family and friends who can think past the prejudices and assumption, and some people with disabilities are that lucky - you learn from an early age that you are essentially untouchable. People shy away from you, literally - I've had people physically recoil from me. We are seen as repulsive, objects of pity, asexual, less than human. Unclean. Some of us can go for months, years (years is probably an exaggeration - even in my case, but oh, it feels that long, sometimes) without affectionate touch from another human being.
OK. This appears to be all I can write at the moment. I have difficulty with this, not because I'm embarrassed about it, but because it is one of the most painful realities in my life.
Here is one of my favourite quotes relating to this whole topic, although I wasn't referring specifically to sexual touch writing the above, it is on the agenda, though. The article the quote comes from is excellent.
"Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It’s easier for us to talk about - and formulate strategies for changing - discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction." - Anne Finger http://www.newint.org/issue233/fruit.htm
I will write more on this, soon, eventually.
[And I did, surprisingly, on 5 February 2006]
My Skin - A Touchy Subject - Part 2
My skin has shrunk into itself
after almost 32 years of not being touched
except to remind me of how untouchable it is
and to remind me of its gaping flaws and wounds that people will fall into
if they come near me
The pain of this leaves me two seconds away from dying
every day
Years of physiotherapy - being pushedpulledstretched
into painful awareness that my body is worthless as it is
So it must be tortured into normal
It didn’t work
I never became normal (Thank God!)
but I tuned out my body
so I didn’t feel the pain
Only time my parents touched me was for exercises that hurt so much I wanted to cry and scream - but I was too scared to.
Huge adults leaning over me shoving my legs into shapes they weren’t designed for, folding up my legs and leaning on them with their full 6 foot basketball/rugby/sports playing weight
Yelling at me when I refused to do the exercises - lazy, lazy, lazy...
Cold eyes staring at me when I came home crying - pushed down steps, tripped up, punched
Sharp words slicing, blaming, condemning
All I wanted was a hug, to feel safe, wanted
Comforted (I can’t say, think or write this word without crying)
“You can’t be in pain, I can’t feel anything”, said my father, smile locked into place with mocking laughter
“Growing pains”, said the doctor - I didn’t know what muscle spasms were until I was well into my twenties
No one told me that they were a normal - but painful - part of spastic CP - not the doctors, physios.
Did they even know?
Psoriasis came when I was sixteen
My skin growing extra layers of hardness
Layers that my heart had not yet developed
Leaving me still hopeful that I would be touched
with gentleness, affection
and for no other reason than to give joy
and comfort
and pleasure
Occasional glimpses of what could be, what I could have
Relationships over before they really began
With men who I couldn’t have stayed with, even if they hadn’t left first
I am glad they left
But I learned why I had a body
And that if I could enjoy sex (and how I did!) then my body was fine, practically perfect
Unfortunately, this is one of the few things I like best when there is another person
I love sex
But I can’t be casual about it
And now only want it with someone I love
and who loves me (Woody Allen notwithstanding!)
My tears dry up before they fall
pulled back inside myself
by a heart that has become a desert
deserted
Words are the poorest substitute for a touch given with awareness
but they are all I have
And, no, a massage wouldn’t help, getting a pet wouldn’t help (I am poor, I can barely afford to feed myself)
The emptiness is too overwhelming
I want someone to look after me for once
And how do I talk about the fact that sometimes, if you have a disability, you don’t get looked after (there is this odd belief that all people with disabilities have someone to look after them - perpetuated by people who don’t know anyone with a disability) - no one ever believes me
It’s true, even if you don’t believe me
Sometimes you get nothing, not even the basics
Cruelty and neglect are equal opportunity - they do not discriminate
Nobody wants to hear any of this
I don’t want to hear any of this
But it is my life
Right now
Today
But please
Not tomorrow
This isn’t a poem, this is the only way I can write about this.
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