I've only got one life to live, and I don't want to waste it all proving I existAnne McDonald
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These words do not exist. I do not exist. Critics
of Facilitated Communication Training say that facilitated
communication is factitious, and consequently that the personalities
presented to the world through facilitated communication do not exist.
Howard Shane, for example, says "Not one alleged competent user of the
technique has come forward to prove the technique is genuine.” (Shane,
1993a) Howard Shane must be right; he is an AAC professional, and
"no group of professionals is
more capable of identifying innate communicative and intellectual
competence than the AAC professional...(Shane, 1993a)"
For Howard Shane, writing off people who cannot talk is
easy. For us to reply is hard, but you have to have gone for half
your life without speech to understand the full horror of what he is
saying. I have had athetoid cerebral palsy since birth and was once
diagnosed as having profound intellectual impairment. I cannot
talk, walk or feed myself, and I communicate by spelling with
facilitation — that is, with someone supporting my arm while I point at
letters on an alphabet board. I was placed in St. Nicholas
Hospital, Melbourne, a state institution, at the age of three, and
lived there without education or therapy for twelve years until
Rosemary Crossley established communication with me in 1977, when I was
16 years old. The hospital relied on its own tests. When I was
seventeen, for example, a pediatrician had been asked to assess my
intelligence. The doctor refused to be told how I signalled
‘yes’ and ‘no’ — he said it might bias his assessment. He refused
to see me in my posture chair, insisting that I be lain on my
back. I couldn’t sit up unsupported, and I couldn’t use my
hands. He wanted me to reach for a plastic ring, and when I
didn’t he concluded that I was functioning at a less than 6/12
level. I was 17 — what would reaching for a plastic ring have
proved? That I was a good baby? On his tests I could never
have shown that I was intellectually normal. In the course of the dispute I was given, and passed, a series
of validation tests using facilitated communication. In 1978
several psychologists gave me messages to pass on to a facilitator who
did not know the messages and set me comprehension questions on written
passages not seen by the facilitator. I passed the messages and
answered the questions successfully, and the psychologists informed the
hospital that I could read and spell. These tests are recorded in
Annie’s Coming Out, the book I co-authored with Rosemary Crossley in
1980. The hospital authorities ignored the positive reports of the
psychologists then just as Howard Shane ignores them now. I nearly starved to death on the floor of St. Nicholas.
Many other children died there. Starving children with cerebral
palsy to death is slower and nastier than gassing criminals, and is
surely a cruel and unusual punishment even by American standards.
Howard Shane doesn’t care what happens to people unless the words they
spell have been certified as correct by him and his
colleagues. In 1979, when I was eighteen, I took a habeas corpus action
against the Health Commission in the Supreme Court of Victoria in order
to win the right to leave (Crossley & McDonald, 1980). My
parents and the hospital authorities denied my request on the grounds
that the reality of my communication had not been established.
The Health Commission psychiatrists attempted to conceal the favourable
test results from the court , but they came out anyway, the court
accepted that my communication was my own, and I was allowed to go. If
Howard Shane had his way I would never have left, because he would have
tested me until I failed. I
don’t like any suggestion that my communications aren’t mine.
They asked me again the following day. I spelt out
another protest. On the third day, in response to a personal appeal from the
Senior Master of the Supreme Court, I passed a message, with only minor
changes; the message given was the two random words ‘string’ and
‘quince’, and the message I spelt was the two words ‘string’ and
‘quit’. That was enough for the court. The chance of
randomly spelling those words was somewhere between a thousand
million to one and five million million to one. My ability to
read and spell has been as reliably validated as it is possible to
imagine. That was enough for the court. Since those court cases, incidentally, I have taken out a
Deakin Humanities degree, taking courses at both Deakin and Melbourne
universities. I have listed the validation tests that I was
given. I did not do those tests willingly. I was
outraged at having my existence as a person called into question.
I felt insulted, humiliated and demeaned by being put through test
after test when I felt that I had already proved myself
adequately. Even now, twenty-seven years after I established my
abilities in court for what I thought would be the very last time, I
still have my communication doubted by people who have never taken the
trouble to inform themselves of the facts on the public record. I’ve proved my communication, but even if I hadn’t I don’t
think I should be subjected to this. My communication is my
business. If I have complaints about misinterpretation I can make
them to another communication partner. If a partner consistently
misinterprets me then I cease communicating with them. In general
I only have minor problems with misinterpretation, and I would see any
attempt to validate my communication or that of my partners as a
violation of my privacy. I objected to it in the Supreme Court
and I still object. While there may be specific instances in which validation of
specific communication may be necessary, to suggest that people only be
allowed to communicate if they’ve passed any test any skeptic wants to
push on them is not only impractical but a violation of civil
liberties. Communication is not easy for people like myself, and
there is nothing to gain from regulating my right to talk to whoever is
prepared to take the time to listen. In fact professionals are not my friends. I challenge
them by being living proof that their tests and judgments are
fallible. I am not the beneficiary of the work of
professionals — I am their victim. I can’t get away from my
disability, but I should be able to escape being cast as a permanent
patient, or a permanent child. It seems I cannot. As I say, Shane claimed "Not one alleged
competent user of the technique has come forward to prove the technique
is genuine.” (Shane, 1993a) He called it “an inappropriate
challenge to professional belief systems” I published
an article containing the evidence I have listed here. (McDonald,
1993) In the next issue of the journal, Shane wrote "In light of
my conclusions in the paper FC: Facilitated or 'Factitious'
Communication, it would be illogical to direct a response to Anne
McDonald." (Shane, 1993b: 10) This would seem a particularly
effective Catch-22: the method cannot be validated unless users come
forward to give evidence, and evidence presented by users cannot be
entertained because the method has not yet been validated. Bibliography Crossley, R. & McDonald, A., 1980, Annie's Coming Out. Penguin Books, Melbourne McDonald, A., 1993, I’ve Only Got One Life and I Don’t Want to Spend It All Proving I Exist, Communicating Together, 11, 4, 21-22 Shane, H., 1993, Facilitated or ‘Factitious’ Communication, Communicating Together, 11, 2, 11-130 |
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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 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. 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. Here are a few links
to friends. I also work for DEAL and CAUS, and speak on issues of
disability. For my most recent articles on people without
speech being bastardized see No
Angel and Buried
Alive. I was honoured to be awarded a National
Disability Award
in 2008, for Personal Achievement: I don't really believe in personal
achievement in this area, though, and I was rude enough to make a rabblerousing
speech at the awards ceremony.
If you want to contribute something yourself, give some
money to DEAL; they're working to see
that nobody is left without a voice. Back to the home page and start
again... 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. |
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