Getting a Life

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Getting a Life
Dicing with Death
Anne Mc Donald
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For this presentation my words are being spoken
by Rosemary Crossley
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Before I start, theres good news and bad
news. The bad news is that Im not going to be
cured till Im 65. The good news is that my
current attendant care services will continue
till then, so Ive got 20 years to live before I
move back into institutional care.
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Dicing with Death
Birth Institutionalization Starvation Inappropr
iate medical treatment
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Always a nuisance I was born bottom first. This
left me with the athetoid form of cerebral palsy.
As a result I cannot talk intelligibly, walk or
feed myself. My intelligence was unimpaired, but
its hard to demonstrate your understanding when
you cant talk or use your hands properly.
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1962 - concentrating on keeping my head up
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St. Nicholas Hospital was a Victorian government
institution for children labeled severely or
profoundly retarded. It was situated across the
road from the Exhibition Buildings right in the
centre of Melbourne. It was not an old
institution it opened in 1964, in buildings
which had been vacated by the Childrens
Hospital a few years previously.
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I was admitted to St. Nicholas on the day it
opened in 1964. I was 3 years old and weighed
12.1 kilos (twenty-seven pounds). For the next
thirteen years I was systematically starved. At
the age of 16 I weighed 12.7 kilos (twenty-eight
pounds).
9
When I entered St. Nicholas I was labeled
severely retarded because I could not talk
intelligibly, walk or feed myself. When I was
12 I was re-classified profoundly retarded
because I still couldnt talk, walk, or feed
myself. When I fought my way out the hospital I
still could not do any of these things. Only
one thing had changed. I had found a means of
communication, a way of using language.
10
Death was always a welcome visitor at St.
Nicholas welcome to us children, because our
lives were unremittingly bleak, and welcome to
the Health Commission, who wanted our cots for
other children. The doctors lamented if the
death rate fell below 10 a year, because that
meant the waiting list would grow and the
Parents Association would complain that there
was nowhere for young children to go.
11
When I turned 18 in 1979 I went to the Victorian
Supreme Court, got a writ of Habeas Corpus, and
won my freedom. During the hearing the Health
Commission said I weighed so little because I
was profoundly retarded. Only one doctor told
the truth and said it was because I had been
starved, and the government ignored him.
12
Food was not the only thing we were deprived of
in St.Nicholas. We had no family contact, no
education, no therapy, no toys, no personal
belongings and no affection. I have chosen to
highlight the starvation because food is so basic
and the figures are incontrovertible. So is the
fact that the only children who starve in a first
world country are those the state doesnt want
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I went to St. Nicholas Hospital when I was three.
The hospital was the state garbage bin. Very
young children were taken into permanent care,
regardless of their intelligence. If they were
disfigured, distorted or disturbed then the world
should not have to see or acknowledge them. You
knew that you had failed to measure up to the
standard expected of babies. You were expected
to die. Annies Coming Out, 1980
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Never seeing normal children, we were not sure
what they were like. Where did we fall short?
In your ugly body it was totally impossible that
there could be a mind. Vital signs showed that
your title was human but that did not entitle
you to live like normal children. You were
totally outside the boundary which delineated the
human race. Annies Coming Out, 1980
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Annies Coming Out, 1980
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
storeroom. 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
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Annies Coming Out, 1980
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.
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Annies Coming Out, 1980
Death lived in the wards at St. Nicholas. He
was often more friendly than the nurses. Death
walked around my cot, but he never thought that
my ribs were well enough covered to stand the
worms a feed.
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The death rate in St. Nicholas Hospital was 8 to
10 a year. That meant that of the 160
residents, most with cerebral palsy, 12 to 16
died each year. Children were systematically
starved in a so-called hospital run by doctors
and nurses. The staff knew what was happening.
When I was 12 I remember the Deputy Matron
saying I would die of starvation in 6 months.
I didnt die, but at the age of 16, after 12
years in the institution, I weighed only 12.7
kilos, or just on 28 pounds.

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Here I am in 1977 sitting ina twin stroller
with my bestfriend, Leonie. How old do we
look? We were lucky we were small enough to fit
in one stroller,because we gottaken for
walksmore often.
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When this photo was taken Leonie was 15 and I was
16. We were both about 105 cm or 3 foot 6
inches tall - the height of 4 year-olds. We had
stopped growing because we didnt get enough to
eat.
21

Because of my disabilities I could not feed
myself, and had to be fed by nursing staff.
They each had an hour to feed 10 children, and
so I had six minutes to eat each meal. As it
is inconceivable that any child with cerebral
palsy could eat enough in that time, the only
conclusion is that we were meant to die. These
were the times and rosters set by the state and
accepted by the medical profession.
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Not all the nurses were nasty and occasionally
there were fun moments. This photo was taken
at Easter 1977, when I was 16.
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Getting a Life
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Language and Literacy
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A different take on eyeball assessment - the
picture that got me talking in 1977.
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1978 Ironically, it was only AFTER I could spell
that I was able to access my pension funds to buy
the corrective seating Id needed all along.
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What makes life worth living?
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family
activities
?
achievements
purpose
shopping
friends
work
love
chocolate
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Freedom to grow - in many ways
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Fed properly after leaving St. Nicholas, I grew
forty-five cms (18 inches) in height (a world
record for growth after age 18) and quadrupled
my weight. Meanwhile my friends continued to
die. Until St. Nicholas was closed five years
later children continued to be starved to death
in an institution five minutes walk from
Parliament House. In their late teens none of
my friends weighed more than twenty kilos.
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Kg
Years
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Moving from St. Nicholas to the world outside
involved more than forcing the Health
Commission to release me. I was like a Borg,
part machine, part human. I had no feeling for
some aspects of social interaction. I had to
learn to cry.
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Rosemary and I wrote a book, which was published
in 1980.
I kept growing, got a wheelchair, learnt to type
with a headpointer, and started studying at
Deakin Uni.
Our book was made into a movie in 1984. It
didnt make any money but Chris got an AFI award
for the screenplay.
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B.Hum.Deakin 1994
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Family
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With all my siblings, 1999
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Friends
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My other family - I often stay with Georgia,
Kathleen and their parents. The girls want me to
live with them and be their big sister.
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A Role CAUS DEAL
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Presenting for CAUS at ISAAC, Dublin 1998
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Interests
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The pride of my Mona Lisa collection!
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Travel
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Paris 1998
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Dicing with Death from choice!
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Dicing with Death Without a Choice
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JOINING
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DISABILITY
Lying in the bath I watch my legs float upwards
without volition, moving at the behest of
Archimedes. I kick with both feet, splashing
water on the floor.
If a wave surges up and chokes meI will have
killed myself in the only way I can. Do I want to
die today, or will I wait till tomorrow? Debating
this question gives me the illusion of power.
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TIME
ME
My time runs differently from normal time
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WAITING
Waiting is the main occupation of those who
cant help themselves - waiting for a drink,
waiting for the next mouthful, waiting for
ones words to be written down.
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DICING WITH DEATH AGAIN
When I lived in St Nicholas I was expected to die
young. I expected to die young too most of my
friends had. We did not expect to die of old age,
if only because we did not age.
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AGEING
The physical changes of ageing arent just a
problem for older people they are also a
problem for peoplewith disabilities, whose
bodies tend to start ageingearlier and
deteriorate at a faster rate.
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RE-INSTITUTIONALIZATION
Doing what you want is often hard if you have
quadriplegia.Its impossible if you live in an
institution or a nursing home.
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Pessimists are always right.
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Anne McDonald74 Rose Street, Brunswick 3056
AustraliaPhone and Fax [phone]E-mail
anne.mcdonald_at_optusnet.com.au Webpage
http//www.vicnet.net.au/dealccinc/
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Disappointments My friends outcomes Physical
restrictions Health problems Not having children
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The Right to Communicate
Communication falls into the same category as
food, drink and shelter - it is essential for
life. Without it life becomes worthless. TASH,
San Francisco, 1992
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In the 1990s the Victorian Department of
Community Services set up guidelines for
communication programs that dont recognise the
right to communicate. The new guidelines say
that clients cant even be considered for
communication therapy if they cant indicate a
choice independently in a variety of situations
without therapy or equipment. This assessment
is performed by untrained carers. If these
guidelines had been in force when I was in St.
Nicholas they would have given victory to the
Health Commission. I would have died on the
floor there and saved everyone a lot of trouble.
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The next generation will prove what I know to be
true that they are stronger and braver than
we who have been worn down by prejudice and
labelling. You must leave us behind.
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Lessons for the next generation
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Open your minds! We routinely open our
windows, our cupboards, and our bowels. We open
up to a knock on the door would opening up our
lives to people who lack the ability to protest
be so hard? Very soon we will have the
technology to do unimaginable things with brain
monitoring. Will we use this power to search for
new potential, or will we simply use it to make
better labels? The next generation will have
to do what is needed to see the right path is
taken.
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For the next generation, lives like mine are only
negative examples. Dont do anything I did for
my first sixteen years. Fill your lives with
as much as you can and expect to live like other
people.
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Lesson One - Refuse to accept labelling and fight
against all labels. Ill admit that not all my
problems are due to labelling obviously I was
going to be severely disabled whatever happened
but it was the labels which led to my
institutionalisation and separated me from my
family. For children with disabilities, the love
and support of families doesnt come
automatically. It has to be nurtured and
encouraged rather than being destroyed by the
arrogant negativity of professionals.
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Lesson Two - There needs to be an irreducible
right to make your opinions known on issues
concerning your future well-being. At the moment
social conversation and medical consent are equal
in the sight of the law, both depending on the
accidental availability of communication
partners with the necessary skills and
commitment. There is no right to be heard.
There is no right to an interpreter. There is no
obligation to listen. We need to legislate for
a right to communicate in formal situations such
as courts, hospitals and schools. Without such
legally enforceable rights, people without clear
or fluent speech will be at the mercy of
decision-makers who can arbitrarily decide to
disallow their communication.
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Lesson Three - the law may be more flexible than
the caring professions. My experience was
that the law erred in favour of capacity and
liberty while doctors and psychologists clung to
their diagnoses regardless of the evidence, and
were unable to face the appalling consequences of
their failure to open their minds to the
potential of the children they assessed.
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The price of liberty is eternal
vigilance. Just after you think youve won the
war you discover the battle-lines have been
redrawn.
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Are you human? In the late eighties I was
studying history and philosophy of science at
Deakin University. My textbook included a
questionnaire entitled "Who is a Human? I
discovered that I was a "profound mental
retardate", defined in the questionnaire as
someone so mentally retarded that they cannot
walk or talk, and have to be fed like a newborn
baby.
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The questionnaire perfectly represents the biases
of a society that locks people up because they
are disabled. As certain animals are going up in
class certain human beings are going down
which would score the higher, the highly
competent ape or the massively retarded and
disabled human infant? Obviously the ape would
score higher. Why would you use the alert,
aware, communicative, responsive ape as a subject
for medical research rather than using the
unalert, unaware, uncommunicative, unresponsive
disabled human?
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In this presentation Im going to focus on three
Ls Labelling Language Law which
have affected my life as much as my disability.
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Dont think institutions like St. Nicholas
existed only in Australia. They existed in
every country which saw disability asgrounds
for imprisonment - England, USA, Canada, China,
Germany, Italy, Greece, Russia, just to name the
countries from which Ive seen photos or videos,
or read accounts. Some have been closed.Some
still exist. I imagine New Zealand had its share.
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Making low IQ a crime warranting imprisonment is
as humane as making shortness a criminal offence.
Both measurements indicate difference. The
judgment that one difference warrants
imprisonment and the other does not is based on
prejudice about the relative desirability of
particular human characteristics. The labelling
and the prejudices combine to produce
institutions like St. Nicholas
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The first paragraph readsAnne McDonald, a
14-year-old girl totally incapacitated by mental
retardation and weighing only 3 stone, will leave
hospital for the first time in 11 years tomorrow
- because ofthe strike by psychiatric nurses.
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Making a point with a pointer
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Getting a Life Anne McDonald The Next
Generation CCS National ConferenceChristchurch
N.Z.November 21, 2004
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Labelling
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Before being admitted to St. Nicholas I was given
a standard test - the eyeball test - cant walk,
cant talk, cant be intelligent. It was just as
accurate as an IQ test would have been. Given
that none of the children brought to St. Nicholas
had the speech or hand skills required to do IQ
tests, all an IQ test could have added was a
meaningless number to justify the label that
allowed the state to lock us up.
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For people who dont have the communication
skills needed to undertake standard tests,
labelling is what we offer. Instead of saying
we dont know how much this child understands and
can learn, we find certainty in labels. Having
labelled a child, we then make our own judgements
come true by putting the child in an environment
which ensures they cannot learn.
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Intelligence is a concept which is due for
revision. As more is discovered about the
neurological impairments which affect performance
both in everyday life and on IQ tests it is clear
that each individual has so many different
strengths and weaknesses that it is impossible to
design a test which will fit every body, much
less to make reliable predictions from scores on
the current tests. The important concern is not
to improve the tests but to stop people being
graded on any measures which can be used to
restrict the rights and opportunities of those
who rank lowest.
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Law
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Early in 1979 my life at St. Nicholas went from
bad to worse, and I said I wanted to
leave. Since 1977 Rosie had been trying to
provide an accelerated primary education for me
and my friends, so we would at least have basic
literacy and maths skills. I read a lot using a
page turner Id bought from my pension.
Weekends I often spent at Chris and Rosies,
meeting their friends and catching up on missed
experiences - walking the dog, shopping for food
and clothes, eating in restaurants, going to
movies and plays, travelling on tram, train and
plane, spending and budgeting my own pocket
money. All this stopped after I complained that
a staff member had tried to hurt me. The Health
Commissions response to the first ever
complaint by a St. Nicholas resident was to
confine me to barracks and restrict my
visitors.
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Children who went into St Nicholas were not
certified in any way. If parents asked the
hospital to look after their child, and the
hospital agreed, then the hospital simply acted
as if it had the same powers as the parents. A
1978 World Health Organization report on law and
mental health argued that children admitted by
their parents should have the same legal
protections as any involuntary detainee the
right to an advocate, a permanent right of
appeal, and regular reviews of their
incarceration. The Health Commission had never
provided any such safeguards for the children in
its care, and no thought had been given to the
position of residents who had been admitted as
children but had grown to adulthood.
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The age of majority in Victoria is eighteen, and
I had turned eighteen in January. Legally, my
parents rights over me had terminated and so,
correspondingly, had those of the hospital. If
I had been able to walk out of the hospital
nobody would have had any legal grounds for
preventing my departure. I could not walk out
of St Nicholas, and St Nicholas had no intention
of allowing anybody to walk out with me. The
doctors contention was that as I only had the
intelligence of a two-year-old I was incapable
of forming an intention to leave, and therefore
they were not keeping me against my will.
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My only way out was to go to the Supreme Court
and seek a writ of Habeas Corpus. Habeas corpus
is rarely invoked, and the medical profession was
being challenged by an ancient and honourable
legal process designed to protect people from
unlawful restraint.
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Poor Margie - when she carried me out of the
Supreme Court, which was totally inaccessible,
she didnt expect to find herself on the front
page of The Age.
The Age10.5.1979Page 1
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The SunMay 18, 1979 Page 1
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First day out! Chris and I have both aged a bit
since this photo was taken in 1979. You can see
why it was very hard for people to see me as a
competent adult!
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Unless someone makes a jump by going outside the
handicapped persons previous stage of
communication, there is no way the speechless
person can do so. Failure is no crime. Failure to
give someone the benefit of doubt is. Annies
Coming Out, 1980
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Anne - height from age 4 to age 30
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Anne - weight from age 4 to age 30
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People without disabilities dont know how much
we who cant work look forward to finding a way
to contribute. Giving presentations like this
may be a way for me to help other people with
disabilities, but its much harder to find ways
of contributing to the wider community. Im able
to sponsor a child for World Vision, but few
people with severe disabilities have the
necessary money. Finding a meaningful way for
people with severe disabilities to contribute is
a challenge for the next generation.
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Love