Friday, January 12, 2007
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.
Wednesday, January 10, 2007
I haven't written about Ashley yet, aside from the occasional comment on other posts. I don't know if I can. Ashley's parents remind me so much of my own parents, and that's not a good thing.
Tuesday, January 9, 2007
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.
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.
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.
Monday, January 8, 2007
When you will not hear my pain
You cannot share my joy
When you will not acknowledge my hate
You cannot feel my love
When you will not allow my weakness
You cannot be supported by my strength
When you will not accept my difference
You cannot appreciate my beauty
When you will not see me
That does not mean I don’t exist
Someone remind me what century we are living in. And so much for living in a supposedly civilised, first world country. This kind of thing keeps happening again and again.
January 03, 2007 12:00am
NEW allegations have emerged of physical, verbal and emotional abuse in a government disability home.
Police are investigating a staff member at a Hobart respite home providing short-term care for people with extreme physical and intellectual disabilities.
Staff allege the man dragged disabled clients by their hair, hit them, told them to "f--- off" and called them names including "f---ing idiot".
They say he dragged a boy across concrete, skinning his knees badly.
Staff say terrified clients would cringe when he shouted obscenities or threatened them.
He is accused of humiliating clients and taunting them.
Last year nine government disability group homes were closed because of serious systemic problems.
In the homes, maggots infested a young brain-injured man's feeding tube and a quadriplegic man's broken leg was not noticed for several days.
Disabled men on a trip were photographed in tourist stocks with a "lunatic" sign.
At the time, then Health Minister David Llewellyn apologised to families and said the standard of care had not been good enough.
Staff at the Hobart respite home at the centre of the latest allegations made their complaints about four months ago and have become frustrated at what they say is the Government's lack of action.
The Health and Human Services Department hired a private investigator to examine the allegations and received his report last month.
Staff believe they have been victimised for blowing the whistle and it is understood they have complained about losing shifts and receiving no support from management.
They have all taken stress leave.
The supervisor has been switched to another government facility.
Disability Services manager Graeme Foale confirmed the allegations had been referred to the police.
"Staff and clients will be advised when the investigation has been completed," he said.
Opposition health spokesman Brett Whiteley said the matter raised questions of process in the Health Department.
He said everyone had the right to be considered blameless in any matter, until an investigation proved otherwise.
"However, the appropriate process must be in place to deal with people expeditiously in cases such as this," he said.
"And importantly the process must not give rise to further concerns.
"It appears concerns have been raised with the process and timing in this matter.
"The minister, Ms Giddings, has the opportunity to calm the concerns of staff close to the matter and I urge her to do that."