Ainsley and Sean
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Sean’s daughter Ainsley is in her 40s. She has severe cognitive disability and epilepsy.
‘Our whole family have been affected by seeing and experiencing the way my daughter was cared for by the system,’ Sean told the Royal Commission.
Sean said restrictive practices, such as restraining and isolating Ainsley to control her behaviour, were particularly damaging.
‘I will never forget the look in my daughter’s eyes when I implemented some of the restrictive practices that doctors approved, and I felt were not appropriate, but you hope that what you are doing actually helps.’
Ainsley was an infant when she first developed seizures. She was having as many as 20 a day, and didn’t respond to medication to control them.
A neurologist told Sean that his daughter would never walk and talk, and that he and his wife should consider placing her into an institution. They decided instead to care for her at home.
Doctors prescribed diazepam for Ainsley, which Sean said seemed to work to control the seizures, but ‘instead of calming my daughter down it was hyperring her up’.
‘It was at this stage our first “restrictive practice” was introduced,’ Sean said.
A psychologist told Sean to train his daughter to sleep.
‘I was to put my daughter to bed at an appropriate time and “hold her down” in her sleeping position until she actually slept. I did hold her down the first night and I was doing this for approximately two hours while she fought being held down.’
The next night Sean tried again.
‘You could see the anguish on her face as I continued with this procedure. It wasn’t working.’
He stopped the practice.
A few years later a doctor told Sean his daughter was ‘probably allergic’ to diazepam. When Ainsley stopped taking the drug, she slept normally.
Exhausted by her high needs, Ainsley’s parents made the difficult decision to place her – while she was still a child – in a hospital for people with disability.
‘The main reason we chose this facility was it was the only one who could cater for her medical needs.’
When Ainsley was older, the hospital moved her into a group home and implemented restrictive practices to control behaviours they described as ‘attention seeking, self-harming or socially not acceptable’.
When she banged her head or removed her clothes inappropriately, for example, staff moved Ainsley to a ‘time-out room’.
‘This meant the back yard. The neighbours called the police during one incident as my daughter was in the backyard, naked and crying … We did note that some staff just dragged [Ainsley] along the ground out of the room to the time-out area or man handled her by the arm.’
Sean said he knew ‘something had to be done’, but the discipline ‘only created aggression and defiance’. After Ainsley was injured several times, Sean told the hospital that the restrictive practices were abusive.
The hospital replaced restrictive practices with positive reinforcement in the 1990s.
‘This meant more trying to communicate with my daughter and to find out what she really wanted by her behaviour. This was extremely positive and incidents decreased dramatically.’
Sean said the abuse the family witnessed had, by then, damaged relationships. Ainsley’s younger brother ‘cannot really connect with her’, avoids doctors, and ‘feels physically sick’ if he enters a hospital.
‘I am sure that the “old methods applied” have scarred my daughter’s relationship with me.’
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.