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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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The Age10.5.1979

Page 1

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.

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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 SunMay 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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Years

Kg

9

10

B.Hum.Deakin U.

1994

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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.

And some things stayed the same …

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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

ｷｷ The AAC profession is not being granted its proper role in the care of people with expressive communication impairmentsｷｷ The AAC profession needs to agree on ethical guidelines in dealing with people without speechｷｷ 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.

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?

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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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WeWe pass through this world but once. pass through this world but once.

Few tragedies can be more extensive than the Few tragedies can be more extensive than the stunting of life, few injustices deeper than the stunting of life, few injustices deeper than the denial of an opportunity to strive or even to denial of an opportunity to strive or even to hope, by a limit imposed from without, hope, by a limit imposed from without, but falsely identified as lying within.but falsely identified as lying within.

Stephen Jay GouldThe 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 McDonald74 Rose Street, Brunswick 3056 Australia

Phone and Fax (61-3) 9386 0761E-mail <anne.mcdonald@deal.org.au>

Webpage http://www.deal.org.au