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Anne - 14 Years in St. Nicholas
Fourteen years in an institution
I'm on the right, next to my best friend Leonie. In this picture I'm sixteen, she's fifteen. We're sitting in a twin baby buggy. As one does.
I lived in St Nicholas Hospital until I turned eighteen. Until I was sixteen I was totally unable to communicate with any adult because I am a severely handicapped athetoid. Athetosis is a type of cerebral palsy which results in a lot of uncontrolled movement; as well, in my case, there was an enormous excess of muscle tension. The combination of these difficulties meant that I could not use my hands, walk, or talk intelligibly.
In 1977 I was taught to communicate by using an alphabet board on which I point to letters in order to spell sentences. That is how I wrote my part of Annie's Coming Out.
The worst thing for me about going into an institution was the total separation from everything I had known. St Nicholas would not allow parents to leave toys or clothes when they left a child. My rabbit, which I loved dearly, could not come, and neither could the animals we had as pets. The ruthless way in which children were parted from their toys was typical of the system's treatment of children. We upset all their rather puritanical ideas about how children should behave. We were not good patients. We cried because we felt abandoned. The nurses didn't know what to do; they didn't know we could feel anguish. The institution had no tally book for broken hearts.
Nurses were discouraged from cuddling children. A crying child needed to be punished for its own good, so it would learn to accept the absence of affection and be happy. Punishment consisted of locking the crying child in a small dark store room. The hospital defined a happy child as a quiet child. Silence was not only golden but sullen; the nurses never saw the looks we gave them when a child was put away.
The doctors were no better. They went home at night, when the crying was worst. Remembering home was easier when you were in your cot with no toys, no games, no stories and no tucking in. We didn't want to be kissed goodnight - that would have been unbearably distressing - but it would have been nice if someone had shown some sign that they would be glad to see us in the morning.
Talking about shit filled an enormous part of the nurses' days. They spoke only a limited form of English, so the words they used were usually those used as abuse in polite society. You used to hold off shitting until you just about burst rather than suffer the abuse. We could not take ourselves to the toilets even if there had been toilets, so we were all in nappies. If you did not use your bowels you would have a suppository rammed in. This was recognized by the authorities, who had provided a tome in which all movements were recorded for posterity. It was called the Bowel Book. This caused no end of problems, because failure to score resulted automatically in laxatives. One day missed meant Duralax tablets; two, suppositories; three, an enema. You had no say at all.
Some nurses never marked the book, so totally unnecessary suppositories were frequently given. If you had a shit after being given a suppository you still had to listen to remarks about your odour and messiness. Instead of giving laxatives at night when they would cause the least embarrassment, they were always given at breakfast or lunch, ensuring a totally ruined morning or afternoon. This would not have mattered once in a while, but some of us were being dosed every second day.
Still, we thought we would be going home. Perhaps we were going to be cured. Little did we know! St Nicholas only has ‘hospital’ in its title because it occupies the old Children's Hospital buildings. Of course, these were available for us only because they had been condemned as unsafe and inappropriate for children. Less medical care was given than we had at home. Laughter was the only medicine apart from laxatives and anticonvulsants, and humour was discouraged because laughter was confused with epilepsy and treated by injecting Valium or paraldehyde.
The nurses had never seen physically handicapped people before and had no idea which responses we shared with normal kids and which were significant indications of distress requiring intervention. Jittery nurses often thought we were frail and used to keep us in bed until the temperature had hit eighty. This resulted in even those children who had no physical handicap becoming wasted and pale. For the spastics, lying flat was disastrous. Their spasm became worse lying flat than sitting, reduced their ability to speak clearly, blocked gesturing, and usually removed any means of interaction. We were each marooned in our private cage. Vitality ebbed. We became prey to infections, which proved to the nurses that they were right to keep us in bed. The ultimate irony was that outsiders used to commend the nurses for treating us so well.
Despite this I was very attached to some of the nurses from the beginning. I think that some did marvellous work to cope with the numbers of kids in their groups and still be affectionate to us. They treated us like babies, but some treated us like nice babies. I was very fond of the night nurse on Ward 4. She was never flustered and was always even-handed in the way she dealt with us. You always got good treatment regardless of whether you responded or not.
We took some time to realize that we were not being treated. You expect a hospital to discharge patients other than in coffins. Some kids did come for temporary stays; funnily enough they frequently died. Usually children who visited knew when they were leaving. This meant that they did not become part of the ward and they took a superior attitude to us long-term residents. (As usual, I am talking about those who could communicate - most could not.) We tried not to hate them. It was difficult. Not only were they going home but they also got more than their fair share of attention. The nurses used to make a fuss of them and compare us unfavourably to them. The nurses felt no responsibility if we were skinny, sickly and sullen.
We had ways of communicating between ourselves. Usually we tried to cheer up any short-stay kids by pointing out how much better their state was than ours. We felt that nowhere could be as dreadful as St Nicholas; however, it seemed that the outside had its problems too. Most short-stay kids we saw were very physically handicapped. Those who spoke were generally unhappy because no one understood them, and they had no one to talk to. At least we had each other. Sometimes kids wanted to help us, but telling others was impossible for them too.
Dying was dependent on the way you felt. Jobs in mental hospitals do not attract the best doctors, and there was no supervision. The patients could not complain. If you wanted to die you had every opportunity. Many short-stay kids took their chance. Death never appealed to me; I wanted revenge. Now that does not seem to matter. What is important is stopping other kids going through what we went through.
Deceiving yourself was the hospital pastime. You imagined you talked perfectly and that you would be taken out for ever. You imagined waking up cured. You never took your condition seriously; it was never as important to you as it was to others. We had never walked; it did not look like we ever would. It was something we had grown up knowing. For busting out of confinement, speech seemed more desirable. We knew there were kids in St Nicholas who could walk, but none who could talk properly. All our imaginings depended for their fulfilment on speech.
Time was when the strongest emotion I felt was hate, and hate makes you strong. Tender emotions were dangerously softening. Implacable hatred of the whole world which hunted handicapped children into middens like St Nicholas twisted my relationships with people for years.
If you're interested in my other work, check these out....
If you want to know what it did to me, read My Frankenstein.
If you want to know what I think of euthanasia, read this.
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