Rita
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Rita contracted polio when she was a child in the 1950s. The disease damaged her right leg and left arm, putting strain on her back and hips when she walked, and regularly leaving her ‘in agony’.
‘I had to wear a splint for my left arm. It had two metal bands encircling my body, which were attached to an upright diagonal metal bar, which kept my left arm up in a “stop sign”. It didn’t exactly make me huggable.’
Rita said early treatment and physical therapy helped her ‘“pass” as able-bodied’ for most of her life. She now lives with the late effects of polio and post-polio syndrome, which includes increasing pain, fatigue and loss of muscle function.
‘My post-polio did not really ramp up to an unmanageable extent until I was on the cusp of turning 65,’ she told the Royal Commission.
Although Rita lived with the effects of polio for most of her life, she’s not eligible for NDIS funding because she’s now over 65.
‘This is inequitable, since the very polio survivors who have experienced the longest lifetime physical and financial burdens are the ones who are excluded from the NDIS.’
Rita contracted poliovirus when she was a toddler and spent six months in hospital.
‘I was so young that I wouldn’t have understood [my mother’s] explanation of why she couldn’t touch me. She said she was very troubled by trying to decide whether it would be worse for me to see her from behind the glass, but not be able to be cuddled, or not to see me at all.’
After Rita left hospital, her mother followed the rehabilitation program recommended by Elizabeth Kenny, the Australian nurse who promoted physical therapy for polio survivors.
‘She instituted Sister Kenny’s regime of hot baths followed by gentle exercises, which seemed to work.’
Rita said that nearly 70 years later, as her post-polio symptoms worsen, she needs physical therapy again.
‘Physical therapy by my osteopath, which costs me $70 per week, is the minimum requirement to keep my body operational. I cannot afford the other physical, or mental health, therapies that would assist me.’
Rita said until recently many doctors didn’t know post-polio syndrome existed.
‘This experience is commonplace, since polio was removed from the medical curricula in universities in around the 1960s, when it was deemed to be “eradicated” in Australia.’
Although the poliovirus has gone, Rita said polio the disease is still causing disability amongst 40,000 Australian survivors.
‘You’d have to kill us all to eradicate polio from Australia.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.