Last night Donna had a phone call from our friends Chris & Rosemary telling us the sad news that our friend Anne McDonald, who lived with them as family and for whom they cared for, had passed away suddenly on Friday 22nd October.
Anne was an amazing woman who touched many peoples lives deeply – she had severe athetoid cerebral palsy and was institutionalised at the age of three. Many years later she came into contact with Rosemary, a new staff member who saw her intelligence and together they found a way to communicate via facilitated communication. With Rosemary & Chris she fought in the Supreme Court of Victoria to escape from the institution by proving that her communication was her own; then she had to fight to win the right to manage her own affairs and she fought for disability rights – and won all the battles. She got a degree, she co-authored a book which became an award winning film (Annie’s Coming Out). Her tenacity was ferocious, she later wrote of her time in the institution:
Dying was dependent on the way you felt. Jobs in mental hospitals do not attract the best doctors, and there was no supervision. The patients could not complain. If you wanted to die you had every opportunity. Many short-stay kids took their chance. Death never appealed to me; I wanted revenge. Now that does not seem to matter. What is important is stopping other kids going through what we went through.
Anne had a great sense of humour, a love of reverse bungy jumping (she wrote that some recent trips to New Zealand were “officially to present at conferences, but really so I can go reverse bungy-jumping”) and an addiction to anything to do with the Mona Lisa.
I’ll leave the last words to Anne, this is her acceptance speech from winning the Personal Achievement Award in the Australian 2008 National Disability Awards which she kindly gave me permission to reproduce. Vale Anne, we will miss you. Our hearts go out to Chris & Rosemary.
Ladies and gentlemen,
I’d like to thank the judging panel for choosing me, and I’d also like to thank the many people who’ve helped me along the way and made it possible for me to be here in Parliament House tonight.
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.
They will tell you that the humanity we share is not dependent on speech.
They will tell you that the power of literacy lies within us all.
They will tell you that I am not an exception, only a bad example.
Many are left behind. We still neglect people without speech. We still leave them without a means of communication. It should be impossible to miss out on literacy training, but thousands of Australians still do.
As Stephen Jay Gould wrote,
We pass through this world but once. Few tragedies can be more extensive than the stunting of a 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.