Graciela and Saoirse
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.
Graciela died about a year ago.
Saoirse told the Royal Commission her daughter was ‘vibrant and high-functioning and just a sweet, beautiful soul’.
She had Down syndrome and was in her early 20s.
A couple of months before Graciela died, her oxygen levels were very low and she had a fall.
At the emergency department of the local hospital, a nurse gave Graciela oxygen but the doctor dismissed her symptoms as sleep apnoea and sent her home.
A few days later, Graciela’s oxygen levels dropped again. She couldn’t stay awake and lost mobility. Saoirse knew something was seriously wrong.
A different doctor at the hospital was more helpful. But otherwise, ‘nobody listened’.
Graciela’s health continued to decline and no-one knew what was wrong. A specialist told Saoirse that people with Down syndrome ‘don’t live as long as we do’ and suggested an end-of-life care plan.
Saoirse was horrified.
‘She's 22 years old. She hasn’t been to hospital in 10 years. She's just got Down syndrome.’
The doctor made fun of Graciela’s weight pretending to be an ape, saying, ‘You know, she's really big.’
Saoirse demanded a different doctor.
Most staff seemed ignorant about people with disability and how to care for them.
‘Hospitals are geared towards regular people. And there's just no accommodations made … This is a place that treats vulnerable and disabled people. How do you not accommodate disabled people?’
Graciela needed a hoist and several people to lift her or roll her safely in bed. Staff either didn’t know what to do or tried to take shortcuts.
‘She's really super-super-sensitive and they're doing all these invasive things to her and she's got no choice because she can’t move anything and she can’t talk by this stage. And they're still persisting with physio and with this theory of … sleep apnoea … low muscle tone.’
Some nurses tried to communicate with Graciela, but none of the doctors did.
‘It seemed like nobody was in charge. We were getting bits and pieces, different people in and out.’
After several weeks, doctors decided to transfer Graciela to a hospital in the city.
Doctors conducted multiple tests but nothing was conclusive.
By this stage Graciela was very hot and couldn’t use her arms or legs.
Saoirse suspected she had a specific disease and suggested she needed blood transfusions.
One evening, nurses were changing Graciela’s bedding. As they rolled her over blood began to gush out of her nose.
The nurses panicked but eventually got her upright and controlled the bleeding.
A short time later, Graciela started to vomit. Saoirse tried to find a nurse but couldn’t.
She alerted a security guard and within minutes doctors and nurses appeared.
It took an hour or so to stabilise Graciela and take her to ICU. They wouldn’t let Saoirse go with her because of COVID-19.
‘Being a person with disability who can’t talk and communicate or anything, even if she was in ICU we should've been allowed … because we knew her needs.’
Doctors told the family to prepare themselves and say goodbye, but a short time later Graciela began to improve.
A few days after Graciela left ICU, doctors stopped her anti-nausea medication. She choked on vomit and died.
‘The next day we just drove home in shock … We can’t help but feel if we were listened to earlier, even if she had still died, she could have had a much more happy and peaceful transition.’
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.