Fourteen years in an institution


By

Anne McDonald

Anne in St. Nicholas

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.


Here's what Rosemary Crossley wrote about the place.

St Nicholas Hospital was officially opened on 13 December 1964 but received its first patients several days earlier. Annie was one of them. The referral to St Nicholas had been suggested by an orthopaedic surgeon at the Royal Children's Hospital. A letter of referral from her general practitioner described her as 'a retarded, spastic child’. There is no record of her having been seen by any doctor or psychologist from the Mental Health Authority, the state government body responsible for the provision of services for the psychiatrically ill and the mentally retarded, before she was presented for admission.

In putting Annie into St Nicholas her parents were acting on the best medical advice open to them, and they cannot be criticized for taking that step. Even now, Victoria offers very little in the way of help for handicapped children living at home. In 1964 there was almost no formal help available ' and the responsibility for full, twenty four hour care for a dependent child rested entirely on the parents. The concept of large institutions had not yet been discredited, and St Nicholas was to be a showplace. It was to provide the therapy modern equipment, and high powered medical treatment which was lacking in the country. Annie's parents could not have known that St Nicholas Hospital would not honour its promises.

St Nicholas is housed in the former buildings of the Children's Hospital. When the Children's Hospital moved into new buildings in Royal Park it bequeathed the old ones to the Mental Health Authority. The Mental Health Authority refurbished some of the old buildings, demolished others, and announced the opening of a short-stay residential hospital for very young and profoundly retarded children with physical handicaps. By definition profoundly retarded people have IQs less than 20: severely retarded people have IQs between 20 and 35.

Originally St. Nicholas was conceived as a hospital where children could come for a few weeks to give their parents a break from the pressure of full-time care, and the age limit was set at eight. There was an acute shortage of residential accommodation in Victoria for the handicapped, however, and the idea of temporary stays soon went largely by the board. Most of St Nicholas's residents came there and did not go home.

The four wards housing the children were in two substantial Queen Anne buildings dating from the 1890s: three-storey, red brick buildings with balconies that had been enclosed to provide more space. The hospital, named after the patron saint of children, is in Carlton, an inner-city suburb of Melbourne, and it is surrounded by high brick walls topped with barbed wire and broken glass. Inside the hospital some buildings had been demolished and some small lawns planted, but as St Nicholas was designed to cater for only a small number of children, there was space to build a number of administrative facilities; an assessment centre and a sheltered workshop for retarded adults living at home were added.

St Nicholas was not a hospital suited to intelligent people, but many of the genuinely profoundly retarded children have been happy there, and many of the deprivations which meant so much to Annie affected them only slightly. It was not expected that Annie would live very long; many seriously handicapped children did not. The implications of the antibiotic revolution had not been fully realized.  

In 1971 I was interviewed for a job as a ward assistant at St Nicholas. I remember the place vividly. The woman who interviewed me had difficulty in accepting that I was really interested in the work and would stay for more than a month. To test my sincerity she took me on a tour of the hospital. If anything would put me off, she thought, that would.

It was an afternoon in the middle of summer, and sunlight was streaming through the windows. In the first ward we went to all the children except two were lying in their cots, which filled the dormitory. The two who were not in bed -two toddlers with Down's syndrome - were all by themselves in an enormous and completely bare playroom. It had  a highly polished white vinyl floor, and white vinyl ran up the base of the walls. The windows were so high you could not see out of them, and there was absolutely nothing else; not a toy in sight. It was depressing, but I persisted. I did want to work there, I said. I had been accepted and was to start there in a week’s time when I heard that there was a position for me at the Spastic Centre. I took up my job there at the beginning of 1972.
 
In 1975 I wrote a submission for a Committee of Inquiry the Premier of Victoria had set up into mental retardation services. I was not trying to single out St Nicholas - most of the other Mental Health Authority institutions had similar problems - but my account of life in an institution describes Annie's life at that time fairly well.

Stone walls do not a prison make, nor iron bars a cage: they do, however, make a Mental Health institution. The place is actually built of different materials from the ordinary house. The doorframes, the bathrooms, the cupboards are all of steel. There are protective frames on the windows. It is an entirely abnormal environment and produces abnormal behaviour.

There is nothing homelike about a ward, largely as a result of pressure of numbers. The most noticeable difference is one of size and scale   a bedroom with forty beds, a dayroom for forty children. There is little of the division of space by use found in a home. The small kitchen is used only for washing dishes and is never entered by the children. The playroom is also a dining room, an occasional bedroom, and a changing-room. There is a bathroom but because of staff pressures a large amount of nappy-changing takes place in both the other areas. Lack of differentiation in room use is probably the explanation for some of the socially inappropriate behaviour shown by the children, in that they have never been taught that certain activities are usually confined to the bathroom. The numbers in the ward mean that any ward is likely to contain children of widely differing behaviour and levels of functioning. With our present shortage of staff it is always the lowest common denominator of ability and behaviour that will be catered for.

Such a large community worries continually about the risk of cross-infection. At worst this results in shiny white lino floors, shiny white lino walls, enamelled iron beds and cots, white laminex tables and drab vinyl covered chairs with metal legs. Furniture is restricted to these basics, and twin bugbears of neatness and economy dictate absolute uniformity. There are no armchairs, no rugs, no fabrics where a child might reach them. The polished floors are a hazard for children learning to walk, and it is easier for children to skate on their bottoms than to crawl. Respect for personal possessions cannot be taught because there are no personal possessions. No place is provided for a child to keep treasures The design of the bathrooms and toilet training and the teaching of self –help. The lack of fabric to absorb noise, and the height of the rooms, aggravate further the noise problems to be expected from any room of forty children. As at a loud party, noise level spirals upward as each person tries to outvoice the clamour. It is difficult to bring home the extent of the problem to anyone who has not himself experienced it. The noise level obviously distresses some of the children, and is probably responsible for some disturbed behaviour; it certainly has a bad effect on the staff.

The children have no opportunity to participate in food shopping, preparation or cooking; they never see the food they eat before it appears in stainlesss steel trolleys. There is no opportunity for a child to choose what he will eat, how much he will eat, or even if he will have a drink with his meal. (Drinks are given at 6 a.m., 10 a.m., 2 p.m., and 6 p.m.)

There are strong pressures on the staff to ensure that meals are eaten quickly. This means that relatively few children feed themselves because it is quicker for the staff to feed them than to teach them. Those children who do feed themselves are served cut food for speed. They eat from bowls with spoons, drink from cups, and never see a knife, a fork, a plate or a cup and saucer.  They never see adults eat and therefore have no idea of what constitutes acceptable meal time behaviour.

The children who cannot eat by themselves are served mashed food to make feeding quicker. They therefore do not experience different tastes or textures.  More importantly, they have no chance to chew. Lack of this exercise means that the acquisition of speech will be more difficult. Lack of solid food is also the major cause of the extremely high incidence of gum disease in the hospital. Gum disease affects the children's general health and is incurable except by extracting teeth. Lack of teeth, of course, also makes speech acquisition difficult and any speech acquired less distinct than it would be otherwise. Once teeth are extracted the children are condemned to a diet of mush for the rest of their lives. A diet of mush results in constipation, which both makes the children uncomfortable and involves an enormous wastage of valuable staff time rectifying the situation.

Dietary deficiencies are a problem. Few of the children ever have raw fruit or vegetables. The dietician of necessity prescribes average quantities of food and leaves to the ward staff the task of redistributing this according to individual needs. In practice, unfortunately, this usually means that all children get identical servings. While the food is chosen to provide a balanced diet, the processing it undergoes ensures that a high percentage of the volatile nutrients are lost. Kitchen routines result in food being prepared some hours before it is needed and being kept warm in heated trolleys. This destroys much of the vitamin content and the conditions are ideal for the multiplication of bacteria. Vitamin deficiencies increase the children's already high susceptibility to nose and chest infections. These infections reduce the level at the child functions educationally as well as producing cases of conductive deafness which often go undiagnosed in the institutional environment.


Because I was trying to keep to those problems that were common to all the large institutions, I did not tell the Premier's Committee about the peculiar way St Nicholas children were fed. Children, even children who could sit up, were generally laid down to be fed. Their heads would rest in the nurse's lap, and their bodies would lie across another chair placed in front of her knees. This meant children were being fed with their heads tilted right back, a method called, for obvious reasons, 'bird feeding': gravity drops the food to the back of the throat, and there is no chance to chew. Children were encouraged not to shut their mouths – a second mouthful immediately followed the first. I have filmed a nurse feeding a child: food is piling high on his face because he is unable to swallow it at the rate the nurse spoons it in. It must have been terrifying. In that position you have very little control over your swallowing, and it is easy to choke. In 1975 each nurse had ten children to feed in an hour, and everything had to be sacrificed to speed. Each nurse now has only five or six children, and the pressure is reduced, but the feeding methods are still similar. How the nurses ever managed to care for ten children, all as dependant as babies, I shall never know.

The provision of clothes also reflected the depersonalising effect of institutions.

Clothes arrive in the ward in sacks and trolleys The children miss out on the experiences of shopping for clothes and seeing them washed and ironed. As well as this immediate deprivation, the fact that these services are carried out in bulk at one remove from the children they are intended to serve has further drawbacks; the type of clothing provided is dictated by the extreme harshness of the bulk laundering methods used, and the economics of bulk ordering result in the lack of a suitably large range of sizes. There are four basic sets of clothing   boy's summer, boy's winter, girl’s summer, girl’s winter.


There is limited variation in size and colour and none at all in fabric or style. Such everyday items of clothing as cardigans. pyjamas and skirts do not exist for the children. The clothes being specially made for the institution brand the children when they do go into the outside world. (Clothes probably also affect staff attitudes to the children. If a staff member has a favourite the first sign of this is that the child is dressed in non regulation clothes, thus giving it a more normal appearance.) Only three sizes of clothing   small, medium, and large   are available for a population aged from 1 to 17. (The babies are generally provided with baby clothes   mainly donated.) At the best of times only a few children fit their clothes. At the worst of times the linen room  is unable, because of problems with the central laundry, to supply clothes in the sizes requested by the wards, and children are dressed in sizes so grotesquely inappropriate as to constitute an additional handicap. Most of the people the children see are in uniform, which again limits their chances of seeing other kinds of clothes and feeling different kinds of fabrics. Because of staff shortages children are not encouraged to dress themselves - here, again, it is quicker to do it for them than to teach them. This not only means that the child can't dress himself but also that he has lost one of the most basic opportunities for finding out about his own body   concepts like left and right, back and front.

St Nicholas, like any other large institution, tends to get out of touch with the needs of the people it is meant to serve. This is partly because care is provided in narrow specializations: instead of a mother and a father the children have nurses, maid, cleaners, cooks, boiler attendants, drivers and gardeners. Each has his own concept of his job and if he is not directly involved in handling children the children may play no part in this concept. The gardener, for example, opposes children playing with paints on the lawn because it makes the grass dirty. More seriously, the work times established by several of the staff unions bear no relation to the real needs of a residential institution The timetable that results bears no relation to the timetable followed by normal children. St Nicholas children have lunch at 11.30 and their evening meal at 3.30, after which there is a sixteen hour wait for breakfast at 7.45. All the children's activities have, therefore, to be so arranged that the children will be back in the wards at 3.30; they miss the most appropriate TV programs, as these come on when they are eating or being got ready for bed, their day is absurdly shortened, and the scope for any activities outside the ward is very much reduced. As in so many matters, arrangements cater for the lowest common denominator. St Nicholas has some wards some very young children, and it is these who suffer least from being put to bed with the light out at five o'clock. Seventeen-year olds in the same ward are rather worse off.

The professional staff are also affected by the constraints of the institution. Children in care tend not to be given the rigorous checks on physical condition that would probably be given children at home. A child with eczema, for example, will not be checked for food allergies, though his hands may be bandaged to stop him scratching – which also, of course, bars him from all constructive activity. Once a child is admitted with a diagnosis of severe retardation there is a tendency to assume that everything that needs to be said has been said, and doctors may be unwilling to arrange for such things as the hearing tests which normal children (who have far less chance of being deaf) have as a matter of course in their school medical examinations: it does not seem to occur to them that the discovery of deafness in a young child might cast doubt on the original diagnosis of severe retardation... For the hospital as a whole the size of the population means that there is a tendency to take services in to the child rather than taking the child out to the service. Haircuts, dentists, doctors, clothes, and such entertainment as there is are all provided within the compound. This means that the children miss out on a lot of valuable social experiences, chances of meeting normal people and experiencing life in the normal world.

The pressures of routine exert themselves right down the line. The daily routine is as unvarying as the food and the clothes. A child due to sit on the toilet at a certain time sits there regardless of whether it was dirty ten minutes previously. All children are still put to bed at the same time, a whole ward's nappies are changed at once. Care is reduced to the lowest common denominator, not because of the decisions of individual staff but because of the pressures of the institution. No matter how absurd the degree of regimentation, the staff will be able to find justification for any particuIar instance. The physically handicapped children who lie on rubber mats in the day room are always laid in exactly the same position on exactly the same mat. As the children are paralysed, their only chance of seeing the other children in the ward or to view the ward from a different angle would be to have their positions changed frequently. The staff explain the present practice by saying “It’s so we know where they are.”

To this you have to add the factors peculiar to St Nicholas at that time: a largely untrained staff, most of whom had a poor command of English; vast overcrowding and extreme understaffing; buildings totally unsuited to their functions (two of the wards had no toilets); no toys, almost no decorations, and children spending their entire lives lying on their backs because there was no proper seating. Maureen Oswin has movingly documented the intense isolation suffered by handicapped children in similarly deprived institutions in England. In her book Children in Long Stay Hospitals, she records that she observed the behaviour of staff and children over a period of eighteen months. She found that each child received an average of five minutes of mothering a day, that is, of playing, talking, and cuddling and an average of an hour's bodily care. The amount of time for the majority of St. Nicholas children who had no physiotherapy would have been similar.

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 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 bastardise people with disability.

If you want to know how I enjoy myself, watch this.

Here are a few links to friends.

I also work for DEAL and CAUS, and speak on issues of disability.  I'll put up some of my presentations when I can.

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@optusnet.com.au.
Mona Anne