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Anne - If we keep babies alive
IF WE KEEP BABIES ALIVE WE MUST GIVE THEM A LIFE WORTH LIVING
Reprinted from Kuhse, H., & De Garis, C. (eds) The Tiniest Newborns: Survival - What Price? Melbourne, Monash University Centre for Human Bioethics
Ghosts haunt me; ghosts of crying children, children who were unwanted and unloved. They had been rejected because they were imperfect. Unfortunately there was no guarantee, no warranty period during which unsatisfactory goods could be returned to maker for repair and replacement. Nobody wanted them, but they were alive and so must continue to live with no future, no family, and no friend but death.
Told that their child would be severely disabled, the parents of these children had rejected them and given them to the State. Institutions for disabled children do not exist to help their residents. They exist to shield society from unpleasantness and to allow treatment such as will encourage death. No one in the institution I lived in could die quickly, but all were intended to die. No one wanted them while they were alive, no one mourned them dead. There was always someone waiting to fill the cot, to occupy the floor space, to exist on the margin of life.
I was not a premature baby, but many of the children who lived in the State institution for profoundly disabled children to which I was admitted at the age of three were. Most of us who weren't premature had still experienced neonatal intensive care (I myself was a breech delivery, and was resuscitated for an hour before being transferred from a country hospital to the Royal Childrens' for a month.) - we had a lot of medical triumphs on the floor at St. Nicholas.
The question remains: why were we kept alive only to die? Most of the doctors in the institution were clear about their role; they would treat minor ailments, but not life-threatening disease. Antibiotics would be given for an ear infection but not for pneumonia.
I think most of the children I grew up with wanted to die. Some were too disabled to know what they wanted - they just knew unhappiness. For some death would have been a release from a half-life. Some were even worse off. There were children in constant pain, children whose pain was ignored because doctors somehow managed to convince themselves that a screaming child vomiting blood was not in pain. If we had been animals we would have been put out of our misery. Why should humanity force us to suffer? It didn't give us any other rights. Children do not know they are suffering for the greater good - they just know they are hurting.
I have strong views on what my treatment should have been. My parents were told I would be a vegetable. if the doctors had really believed what they said, they should have made sure I died. To give me back to my parents with such a label was unfair both to them and to me. When my parents rejected me I should not have been institutionalized, I should have been offered for adoption. If no one had wanted me I should have been killed. We should offer unwanted children the same kindness we offer unwanted pets rather than forcing them to bear the burden of society's unfeeling morality. A Buddhist friend of mine used to shut kittens away rather than kill them directly. We are more enlightened - we kill the kittens and shut away our unwanted children.
There is also another question to consider. As it happens, the doctors were wrong. I am not a vegetable. What difference does that make? None. The doctors thought I was, and they should have acted as if I was and killed me. If they had known that I would be severely physically disabled but still intelligent, then what? My disability does not make life unbearable. I could have had a happy life despite my disabilities if I had been loved. This was the case, I believe, for most of the children at St. Nicholas. But even if the exact form of my disability had been known it should not have affected my right to death when unwanted.
At present, once a decision to treat a child has been made the child is condemned to life regardless of the outcome of the treatment and the response of the family. This is unfair to disabled survivors and their families. If the medical profession continues to salvage the tiniest babies who have a relatively high chance of being severely disabled it must consider providing a later death for those rejected once their disabilities are diagnosed. If this proposal is too horrifying for you to contemplate, then I think you will have to consider setting rigid guidelines based on risk of disability alone. Parents who say before the event that they will care for the child even if it is disabled often change their minds. many of my friends at St. Nicholas were conceived, -born and saved despite medical advice about the risks. Their parents had wanted children desperately but had felt no responsibility to the abnormal result of their insistence.
I love the life I now lead, even though I am severely disabled. However, I still believe I should have been killed rather than being locked away for fourteen years.
If you're interested in my other work, check these out....
If you want to know about my years in hell, try St. Nicholas Hospital.
If you want to know what it did to me, read My Frankenstein.
If you want to know more about my story, read the book I wrote with Rosemary Crossley - Annie's Coming Out, Penguin Books. It's out of print, but second-hand copies are available on Amazon and Alibris.
If you want to know how I got out, look up Facilitated Communication Training.
If you want to know why communication is so important, read The Right to Communicate.
And read about the people who are trying to stop it.
And there's my work on The Terrible Triple C, another one of the ways in which professionals bastardize people with disability.
If you want to know how I enjoy myself, watch this.
And I travel...
Here are a few links to friends.
I also work for DEAL and Communication Rights Australia (CAUS) and speak on issues and speak on issues of disability. For my most recent articles on people without speech being bastardized see No Angel and Buried Alive.
Most recently, I was given a National Disability Award, and took the opportunity to set the record straight.
If you want to contribute something yourself, give some money to DEAL; they're working to see that nobody is left without a voice.
Warning: there is quite a bit of overlap between these articles. When you take as long as I do to spell a sentence you use it as often as you can, and the hell with repetition.
Or you can email me at anne.mcdonald(at)annemcdonaldcentre.org.au