If We Keep Babies Alive We Must Give Them A Life Worth Living
A story about child institutionalisation.
Content Warning: This story discusses child institutionalisation, segregation and neglect.
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 my institution could die quickly, but all were intended to die. No-one wanted them while they were alive, no-one mourned them dead. There is always someone waiting to fill the cot, to occupy the floor space, to exist on the margin of life.
Many of the children who lived in the state institution to which I was admitted at the age of three were premature babies. 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 Children’s 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 institutionalised, 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 in a cupboard 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. And if they had known the truth, 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 us to contemplate then I think we will have to consider setting rigid resuscitation 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.
This story first appeared in Women and Disability – An Issue. A Collection of writings by women with disabilities. The booklet was produced by the Melbourne based Women with Disabilities Feminist Collective in the late 1980’s. The exact publishing date is unknown.