They aren't babies, but they're small and in nappies.
How old do you think they are?
The girl on the right is Anne McDonald. When this photo was taken, she was 16 years old. The girl beside her is Leonie, and she was 15 years old.
And they are in a double pram!
Living in the 'hospital', Anne was neglected and unfed. At 16, she weighed a tiny 12 kilograms. Dexter weighs more than that, and he's only three!
This is why Dexter is so lucky.
No one ever told us to put him in an institution.
(It's a good time to have cerebral palsy!)
Anne and Leonie were placed in an institution, because of their cerebral palsy.
Anne's story is both heartbreaking and incredibly inspiring.
(We will share Anne's story in two parts. This is the first part, and is the story of her life. The second part will explain more about the Anne McDonald Centre.)
Anne was placed in an institution, and neglected.
She was not fed enough and failed to grow.
She was never educated and dismissed, left to lie on her bed for hours at a time...
all because she had severe cerebral palsy.
Her life was being wasted.
Until Anne met Rosemary, who modified her teaching and allowed Anne to shine.
And, thanks to Anne, people with disabilities now have a voice... even those like Dexter, who are non-verbal.
This is Anne's story.
This was not a hospital, but a condemned building.
No real medical care was provided.
Anne lived there until she was 18 years old. She had athetoid cerebral palsy. She had an excess of muscle tension and uncontrolled movements. This is very similar to Dexter's form of cerebral palsy.
Anne was unable to walk or talk intelligibly, and was unable to use her hands, most likely because of the excessive muscle tension. Due to early intervention and daily therapies, Dexter now enjoys the use of his fingers. Anne never received such support or therapy.
When Anne was 16 years old, she was taught to communicate, using an alphabet board. She communicated by pointing to letters and spelling out words. It was in this way that Anne wrote her section of the book "Annie's Coming Out".
Anne remembers the staff being unhappy with the patients. Feeling abandoned, they cried, and this annoyed the staff. They didn't realise the children could feel upset and worried at the separation from their parents.
(We've learned a lot about people with cerebral palsy since then!)
Cuddles were rare. Signs of affection were rare.
Punishment was administered by placing the child in a small dark store room.
Alone.
Anne commented on the lack of love shown at night. There were no games or toys or stories. The children were simply placed into bed and left.
Toileting was an issue. Rather than face the ridicule and verbal abuse, the patients would prefer to "hold off from shitting until you just about burst".
The patients could not walk to the toilet themselves, so were all in nappies.
Suppositories were used on anyone who did not go to the toilet at the correct time.
Laxatives were also given. A "Bowel Book" was used to record every bowel movement. If one staff member failed to record a movement, suppositories or laxatives were given unnecessarily.
Anne often thought she would be going home... but that never happened.
Laughter from patients was confused with symptoms of epilepsy, and patients soon learned that laughter was result with injections of valium or paraldehyde.
Much of the time was spent lying in bed, because the nurses had limited experience with people with disabilities. 'This resulted in even those children who had no physical handicap becoming wasted and pale. For the spastics, lying flat was disastrous. Their spasm became worse lying flat than sitting, reduced their ability to speak clearly, blocked gesturing, and usually removed any means of interaction. We were each marooned in our private cage. Vitality ebbed', recalled Anne.
Although many of the patients were non-verbal, they were able to communicate with each other. They tried not to hate the 'short-stay' patients, who were treated with more affection and received more attention.
Anne remembered there were a few nurses who were friendlier and more patient.
Anne also recalled that death among patients was an option many short-stay patients took. There was limited supervision, so ample opportunity. At the time, Anne wanted to live, as a for of revenge. Later, she realised that revenge was less important that teaching the world about the 'hospital', so no more children would ever be treated in the way she was.
Anne estimated that 163 of her friends had died while in the 'hospital'.
Anne said "I felt was hate, and hate makes you strong. Tender emotions were dangerously softening. Implacable hatred of the whole world which hunted handicapped children into middens like St Nicholas twisted my relationships with people for years."
(Read more here.)
She survived the 'hospital' and became a well known advocate for people with a disability.
She also became one of the first people without speech to earn a degree, in Australia.
She realised Anne was learning.
Anne was 16 years old. | Rosemary adjusted her teaching, to allow Anne to demonstrate her capacity to learn! At the age of 16 years, Anne was spelling and through this, was indicating what she needed and wanted. And, what did she want? She wanted out of the 'hospital'! Anne needed the backing of the Victorian Supreme Court to allow her to leave the facility. It was a landmark decision... and one that saw people without words suddenly obtaining rights they'd previously been denied. Once out, Anne never forgot her friends still in the 'hospital'. She worked tirelessly until the institution was closed down and her friends resettled among the wider community. |
She completed her higher school certificate English exam and, in 1944, obtained a humanities degree.
All this from a child who, at 16, weighed 12 kilograms, because of years of neglect.
Anne still had severe cerebral palsy, but was now free to 'live'. She went bungy jumping on many occasions, and enjoyed time at the local pub. She traveled. And, she loved the Mona Lisa, for her faint smile. As people learned of Anne, she was called on to speak at conferences, both here and overseas. (Read more here) |
The book was co-written by Rosemary Crossley.
In 1984, a film was made, based on this book.
Read about the Anne McDonald Centre, and her lasting legacy.... ensuring people without a voice can find a way to be heard.
It's a good time to have cerebral palsy
Equal love (for Dexter, even with cerebral palsy)
The Good Pain (Therapy)
Anne McDonald Centre website
Our post on the Anne McDonald Centre
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