Tomas and Patience
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.
Tomas, in his early 20s, is autistic and has a range of health issues that require regular blood tests and occasional surgical procedures. His mum, Patience, told the Royal Commission they have had ‘terrible experiences’ in the health system.
‘It has taken over 20 years to find a hospital and anaesthetist who are willing to make suitable accommodations.’
Patience explained that because Tomas experiences ‘extreme anxiety’, he is unable to have blood tests without some form of anaesthesia. Tests in mainstream pathology services and in doctor’s rooms are impossible for him.
‘Hospitals have just abandoned the idea of giving him a blood test or other treatments because it is too hard and they are concerned about everyone's safety.’
Patience believes public hospitals should have facilities, specialists and specialist anaesthetists to make necessary dental and medical procedures available and ‘less stressful’ for people who cannot otherwise access these essential services and ‘whose health and well‐being are therefore compromised’.
Patience told us of her hopes for the future.
‘I think we have come a long way in our perceptions and treatment of people who have a disability. Just like other groups of Australians who have a history of violence, abuse, neglect and exploitation, the past must be acknowledged, corrected and for those who have suffered terribly, helped to a better future. I hope that our nation can adequately cater for and protect people with a disability so that the parents who love them, as they themselves grow old and face their own infirmity and death are not so terrified for their future. Our wonderful sons and daughters want the same things as everyone else, starting with love, a sense of belonging and well‐being, opportunities to pursue their interests and joy.’
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.