Anne's memorial service 2

Anne's Speech

Our friend Stephen Jay read the speech Anne gave in Parliament House in 2008.

"I spent my childhood and adolescence in a state institution for severely disabled children. I was starved and neglected. A hundred and sixty of my friends died there. I am a survivor.

That isn’t a heroic achievement. Anyone who was put into a large institution in the times when large institutions were sugarcoated concentration camps was as much a hero as I was. They stayed alive when they could and they died when they couldn’t. Such heroism is easy to achieve in giant barracks where the prisoners stay alive through being cheery enough to attract a staff member to give them that vital extra spoonful of food.

I wasn’t exceptional in anything other than my good luck. I was selected for an experiment.

Rosemary Crossley wanted a subject for her Bachelor of Education literacy project. She chose me. The aim of the experiment was to see if I could make gains in my tight-armed pointing to blocks with different colours on them. Rosemary found I could point to colours, then to words, and then to letters. She taught me to spell and to make my wishes known.

I made known my wish to leave the institution, and then all hell broke loose. I went to the Supreme Court and won the right to manage my own affairs.

Unfortunately, that didn’t mean that the institution offered the other residents the right to manage their own affairs. I was an exception. Through no desire of my own, I was out front in the struggle to get rights for people without speech.

I tried to show the world that when people without speech were given the opportunity to participate in education we could succeed. I went to Deakin University and got myself a degree. That, too, was seen as an exception.

I gave papers and wrote articles on the right to communicate. I set up a website to show that there was hope for people without speech. People thanked me for being an inspiration; however, they didn’t understand why there weren’t more like me. They continued to act as if speech was the same thing as intelligence, and to pretend that you can tell a person’s capacity by whether or not they can speak.

Please listen to me now.

The worst thing about being an inspiration is that you have to be perfect. I am a normal person with only normal courage. Some people who should know better have tried to give me a halo. Anybody could have done what I have done if they too had been taken out of hell as I was.

If you let other people without speech be helped as I was helped they will say more than I can say."

We then sang Blake's Jerusalem.

Jan Ashford

Jan Ashford headed up CAUS, which later became Communication Rights Australia, and worked side by side with Anne in many fights.

"I first met Anne in 1987 when I was employed as the Coordinator of Communication Aid Users Society. The group was founded in 1980 by a group of people including Anne, Lesley Hall, Shane Kelly, Jack Tyers and Phillip Garvey and was called BUG – Board Users Group. It was a loose network of people who supported the rights of people with little or no speech and the need for them to have a voice in all aspects of life. Our time was occupied with outings, discussion groups, meetings but this was never enough for Anne. Anne wanted to see change. She was a strong, vibrant woman who had a committed to a social justice agenda and wanted communication on that agenda.

The legacy Anne has left us is a very powerful presence that had inspirational qualities.

Anne has taught us at Communication Rights Australia about the human right to communicate and what that means on a personal level. The following comments made by Anne still ring strong and clear in my ears.They  impact on my work practice over many years, and that of our human rights advocates:
• ‘Whose voice is it anyway?’
• ‘For successful communication to take place both people need to have patience’
• ‘People with little or no speech are always vulnerable to the manipulation of people who can speak. The most common manipulation is when people fail to acknowledge that the non speaker has opinions and the right to make these opinions known’.
• ‘The ultimate disempowerment for a person with little or no speech is when speakers decide what communication device the non-speech person will be allowed to use’.

As a 15 year old young man told us recently in a meeting with his school ‘I can’t control my body, can’t communicate in the usual way, through speech. I am different but this doesn’t mean I’m less than human’.

Anne has left us to continue the battle for the right to communicate and that is her legacy to us.

We as Anne’s friends and colleagues will continue this battle on her behalf and the many others with little or no speech. We will continue to negotiate to have facilitated communication accepted within Victoria so that people can enjoy the same rights as people with little or no speech in Queensland.

In acknowledgment of Anne’s memory Communication Rights Australia will present a yearly Award for people who have done the most to advance the cause of people with little or no speech.

Anne and her battles will remain close to our heart and provide us with the momentum to keep the communication rights on the public agenda."

Chris Borthwick

Rosemary's partner Chris lived with Anne for thirty years and supported her in her struggles.

Anne enjoyed lots of things – opera, swimming, bread pudding – but she didn’t always enjoy them in the same way other people did. In horror movies, for example, she sometimes attracted attention by her rich chuckles in the scary parts. She’d been close to real death, and she’d known true horror, and she wasn’t to be fooled by imitations.

Horror was children starving to death a short walk from Parliament House. She had a large part in stopping that. And horror was people being denied a mean to communicate, and stopping that was something she was fighting for till the day she died.

Anne could have had an easier life. If she’d accepted the identity the media had ready for her and stepped into the role of a heartwarming human interest story, a triumph of the human spirit, she could have made friends everywhere. I should know: that was the script I wrote for Annie’s Coming Out, and we won an award.

As it was, though, she accepted from the very beginning the duty of bringing her friends out of the institution after her, and that involved fighting governments and bureaucracies for years.

And when St. Nicolas had been closed, she took on the duty of fighting for the rights of all those who couldn’t speak, and that bought her into conflict with governments and bureaucracies and educators and academics and Uncle Tom Cobley and all.

The really tough bit was getting people to understand what she meant by the right to communicate. That’s a fight that hasn’t been won – hell, it hasn’t even been lost. Her challenge has simply been ignored.

Anne believed that everybody without speech had a right to communicate. Everybody, whether they had musculoskeletal difficulties like cerebral palsy, or genetic problems like Down syndrome, or neurological issues like autism, or diagnoses of intellectual impairment, was entitled to a presumption that they could communicate fully, and everybody without speech should be given the kind of support and encouragement that would enable them to remedy their problems and join the literate community.

Anne didn’t mean, either, that we should just give these people a means of choosing between tea or coffee. She believed that everybody required access to the full resources of language. Saying that some people don’t have the intelligence to use language is calling on unexamined prejudices to justify abandoning difficult cases to a diminished existence.

She said in one of her last presentations 'No one should be assumed to be incompetent on any lesser evidence than we would need to imprison them for life.'

She knew what it meant to be below the line that divided the sheep from the goats, the saved from the damned, and she wanted that line to be erased absolutely.

Everybody can be literate, she said, as she was. In a world where hundreds of thousands of people without speech
haven’t even got a scrap of card to signal ‘yes’ and ‘no’ that may for all I know be outside the bounds of the possible. But it’s what Anne believed, unswervingly, and it should be said here.

And if you do believe everybody has a right to literacy a lot has to change. Anne’s work goes on. Only now it goes on without her, and it’s going to be much less fun."

Sharon Pertzel

Sharon Pertzel was in St. Nicholas Hospital with Anne. After the Hospital was closed Sharon went to live in a house in the community, where she wrote this poem.

Where I came from I know not.
My beginning was hard and so not
to be remembered without pain.

Whatever happened to me?
Why can't I go through the
Gates and ask to be born again?

Somewhere there must be a second chance
For those of us who will never dance
To live a life free from stain.

The Reverend Don Edgar then read a passage from the third book of Ecclesiastes.

  1. To every thing there is a season, and a time to every purpose under the heaven:
  2. a time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
  3. a time to kill, and a time to heal; a time to break down, and a time to build up;
  4. a time to weep, and a time to laugh; a time to mourn, and a time to dance;
  5. a time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
  6. a time to get, and a time to lose; a time to keep, and a time to cast away;
  7. a time to rend, and a time to sew; a time to keep silence, and a time to speak;
  8. a time to love, and a time to hate; a time of war, and a time of peace.

 

For a change of pace, we then showed the bungy-jumping video.

And after that we sang "Shall the circle be unbroken", in the Muppets version, and then we left the cathedral to the strains of Elgar's Nimrod to cross the road for a wake at ACMI.

Anne McDonald Centre. 538 Dandenong Road, Caulfield 3162 Victoria, Australia Ph: 03 9509 6324, Fax: 03 9509 6321
 
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