Transcript No Angel ppt 2a - Anne McDonald Centre

Communication meant I could brief a lawyer.
My only way out of the institution was to go to the
Supreme Court and seek a writ of Habeas Corpus.
Habeas corpus is rarely invoked.
The medical profession was being challenged by an
ancient and honourable legal process designed to
protect people from incarceration by their rulers.
The shit hit the fan big-time.
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Poor Margie - when she carried
me out of the Supreme Court,
she didn’t expect to find herself
on the front page of the paper.
The Age
10.5.1979
Page 1
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My lawyers arranged for me to be given two tests
which helped me to win the right to leave St.
Nicholas and manage my own affairs.
The WAIS - Wechsler Adult Intelligence Scale - I did
with arm support.
The PPVT - Peabody Picture Vocabulary Test - I did
without support.
Both tests were totally unsuitable for someone
like me, but luckily I got a score in the average
range on them both.
If I hadn’t, I probably wouldn’t be here today.
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The Sun
May 18, 1979
Page 1
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First day of the rest
of my life!
Thanks to
Communication

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After my release from St. Nicholas
some things changed …
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Kg
Years
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B.Hum.
Deakin U.
1994
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And some things stayed the same …
When the media asked me for a comment on my
release I said
“Help the others.”
Thirty years later, many children without speech
still suffer under the same false assumptions.
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The only possible way to find out
how much a child who cannot talk
actually understands
is to develop
an alternative means of
communication
for that child.
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No child should be presumed to be
profoundly retarded because they
can’t talk.
All children who can’t talk should
be given access to communication
therapy before any judgements are
made about their intelligence.
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Everybody at ISAAC should
agree with those statements.
Not everybody is willing to
fight for them.
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I was shocked by Ashley’s situation.
I was also shocked that I heard no defence of
Ashley’s rights by those who were in a position to
know how wrong her assessment was and who
were in positions where their voices would be
heard.
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Was any AAC specialist involved in Ashley’s case?
None has been mentioned in any of the articles
or scholarly reports dealing with the case.
If such a person was not involved, it raises
questions about why the profile of AAC is so low
that an AAC specialist is not seen as a key player –
perhaps the key player – in her team.
And if an AAC specialist was involved, how would
they defend their actions?
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The American Association for Mental Retardation,
the American Association on Intellectual and
Developmental Disabilities, and several other
such groups of professionals working in related
fields wrote to The Archives of Pediatrics and
Adolescent Medicine to condemn Ashley’s
treatment.
ISAAC did not.
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What provision is there for any representative of the
discipline of AAC to speak out on ethical breaches in
the area of communication therapy?
Surely I can’t be the only person in the public debate
to have raised the issue of AAC?
If organisations such as ISAAC and USAAC are merely
social clubs providing networking opportunities you
are tragically failing people like Ashley and Katie.
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The cases of Ashley and Katie show that
ｷ The AAC profession is not being granted its
proper role in the care of people with
expressive communication impairments
ｷ The AAC profession needs to agree on
ethical guidelines in dealing with people
without speech
ｷ There needs to be a mechanism for AAC
bodies and AAC practitioners to speak out on
ethical issues.
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.
No one like Ashley or Katie
should be assumed to be
incompetent on any lesser
evidence than we would need
to imprison them for life.
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Ashley is now condemned to be a Peta Pan and
never grow, but it’s not too late for her to learn to
communicate.
It is profoundly unethical to leave her on that
pillow without making every effort to give her a
voice of her own.
What can you as a discipline do to see that Ashley,
and Katie and people like them, are not denied the
right to develop a means of communication?
The first requirement for communication
access is a presumption of competence
– a presumption that everyone can
communicate in some way,
regardless of their labels.
Ashley and Katie were denied this.
What went wrong?
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Perhaps a partial answer can be found in a questionnaire
entitled "Who is a Human?” included in a prescribed text
I read when I was studying History and Philosophy
of Science at Deakin University.
I discovered - again - 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 represented the biases of
a society that locks people up because they are
disabled. As certain animals were going up in class
certain human beings were 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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We pass through this world but once.
Few tragedies can be more extensive than the
stunting of life, few injustices deeper than the
denial of an opportunity to strive or even to
hope, by a limit imposed from without,
but falsely identified as lying within.
Stephen Jay Gould
The Mismeasure of Man
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Unless someone makes a jump by going
outside the handicapped person’s 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.
Annie’s Coming Out, 1980
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Anne McDonald
74 Rose Street, Brunswick 3056 Australia
Phone and Fax (61-3) 9386 0761
E-mail <[email protected]>
Webpage http://www.deal.org.au
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