Disabled 15 year-old girl to lose womb
Doctors are preparing to remove the womb of a disabled teenager because her mother fears she will not cope with the complications of adulthood.
Keep my daughter a child, pleads mother
"Every year Alison Thorpe sees her daughter’s life getting tougher. A victim of severe cerebral palsy, the 15-year-old is too big for pastimes that used to bring her joy."
----------
OK. For those who don’t know. I am a woman with cerebral palsy. Many of the women with disabilities I have known in my life have also got cerebral palsy, ranging from mild to severe forms.
In view of this, I feel I *am* qualified to comment, despite what the parents of this girl, and of Ashley X, would like to think. Many of the activists fighting against this invasion of bodily integrity are women with disabilities, and/or people with CP. We live with the realities of disability every single day of our lives. We do know what we are talking about. There are other options. These families act like they are the first to ever deal with children with disabilities growing older. Bullshit. Thousands of families have been there before, and have not resorted to such drastic measures. They have found ways of coping. And if they are not coping, they need to be given support. Funding for assistance, for workshops on menstruation management for caregivers, noninvasive medical alternatives.
Women with disabilities, including those women with severe forms of disabilities have the right to whole bodies, bodies that are not carved into for no medical reason other than to make life convenient for caregivers, or to spare people from the awareness that PWD do grow up, and become adults.
There is also a very disturbing assumption made about the female body, that it is undignified and messy, that menstruation is something to be ashamed of. This is evident in the way society relates to female bodies in general, and then when you add the revulsion - and it is revulsion, I have lived all my life seeing the disgust in people's faces when they look at me because I have CP - society feels when confronted by severe and/or visible disability.
Oh, and just for the record - reducing someone’s external sex characteristics (ie amputating both breasts, as happened to Ashley X), does not, and never will reduce the risk of sexual abuse. For gods sake, babies, infants, toddlers, pre-pubescent children of both sexes, ablebodied and disabled, are abused in horrifying numbers. Mutilating someone’s body is never the answer - especially when it would never be countenanced for ablebodied children.
And by the way, there is no such thing as a ‘victim’ of cerebral palsy. It is not some horrible spectre deliberately stalking people. It’s just there. It’s not the worst thing in the world - more than a few aspects of it can be difficult, depending on circumstances, but practical and emotional support, and being treated with dignity and respect, can go a long way towards living a good life. And needing assistance with toileting and other personal care tasks is not inherently undignified or degrading - unless people around you behave like it is.
Parents, please remember - there are others who have gone before you, there are people with disabilities who have lived the reality of what your child is living, there are families who have brought up children with disabilities through to adulthood, seek them out, seek us out, listen to what we have to say about what has made our lives easier and what hasn't, what really constitutes dignity. There are alternatives to these mutilations.
And for those who think that people with severe disabilities - including those with cognitive disabilities - cannot have consenting sexual relationships, please read this story.
“A pioneering policy is breaking an old taboo by encouraging disabled teenagers to form sexual relationships, with help from carers if necessary”
“Jan Symes remembered every detail of the scene. A 17-year-old girl with straight brown hair pulled back into a ponytail, heavy purple boots and clothes ill-suited for her age sat opposite her in a small office at Treloar’s College, near Alton in Hampshire.
The teenager had cerebral palsy and was sitting in a wheelchair, using a machine to speak. She lifted her head, looked across at Jan and asked: ‘Do you think it is all right for me, as a very disabled person, to fancy someone?’ Symes was horrified. ‘Will society think it is disgusting?’ the girl went on.
Today the college for physically disabled teenagers over 16 goes public about a ground-breaking ‘sexuality policy’ that began to take shape that day two years ago, when a young woman shocked her counsellor by asking whether she had the right to fall in love.
A policy was designed that aimed to break down one of society’s most enduring taboos: that of disability and sex. And now, for the first time, staff are ready to speak out about the controversy, legal wrangling and heated debates involved in producing a three-page document that fundamentally changed the ethos of the college. Students, it stated, not only had the right to pursue sexual relationships, but would be assisted physically and emotionally by specially trained staff.
Now other colleges for the disabled are looking to make a similar change. Like Treloar’s, they have young people whose disabilities are so severe that even to hold hands, cuddle or kiss is impossible without help.”
Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts
Monday, October 8, 2007
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.
*~*~*~*~*~*~*
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